ability Magazine of Spina Bifida Hydrocephalus Ireland Annual Conference 2014 Edition Autumn 2014
positive life choices presents
my say my way
Chairman’s Address & Contents
Chairman’s Address As this is the first magazine since I was elected chairman I would like to thank you the members and the branches for giving me the honour of being your chairman and for supporting me in this role. I hope that I can fulfil your expectations of me while I am in this position. I would like to take this opportunity to acknowledge the work that was done by George Kennedy and to take this opportunity to wish him well in the future. The work of the organisation is continuing and we have just come off the back of a very successful SHINE project which we got great feedback from. The Peer Support Group continues to go from strength to strength and the Family Support Workers and all our staff continue to be an integral part of the work of SBHI. The Saturday Club is also continuing to be a great success and thanks to Andrea for her tireless work in that regard. The International Federation continues to provide support to us as a national organisation and we continue to be represented by Thelma on that. The International Federation will be well represented at our conference and there will be plenty of opportunities for you our members to find out more about what they do. I believe the conference has a great line-up this year and I have no doubt that many will be inspired and motivated by the speakers we have lined up.
In this issue: Chairman’s Address l SBHI Staff List and Contact Details l Packie Bonner Golf Classic l Influenza (Flu) l 12 Marathons – 12 Days l Catherine’s Story l SAP Volunteers l Wheelchair Rugby 7s l World Spina Bifida & Hydrocephalus Day l Double Celebrations for Sean l Positive Life Choices – My Say, My Way: Agenda & Biographies l Educational Officer Update l Special Needs Bank Account l Me and My Backbone l SBHI Peer Support l Eurordis l SHINE 2014 l Around the Country l Orthopaedic Footwear Centre l
I look forward to seeing you all at the conference and hope that you all enjoy this edition of the magazine and indeed the conference. – Frank Larkin, Chairman, Spina Bifida Hydrocephalus Ireland, www.sbhi.ie, info@sbhi.ie
A WORD FROM THE EDITOR:
Spina Bifida Hydrocephalus Ireland (SBHI) National Resource Centre: Old Nangor Road, Clondalkin, Dublin 22. Tel: (0I) 457 2329 Fax: (01) 457 2328 Lo-call: 1890 20 22 60 Email: info@sbhi.ie Website: www.sbhi.ie Ability magazine: Editor: Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com
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I would like to take this opportunity to thank all those people who contributed to the Ability magazine. I hope you will enjoy reading this issue. – Thelma Cloake Tel: 087-2883279 Email: thelmacloake1@gmail.com
www.sbhi.ie
SBHI Staff & Contacts
SBHI STAFF LIST AND CONTACT DETAILS National Resource Centre, Old Nangor Road, Clondalkin, Dublin 22 Phone: 01 4572329 Fax: 01 4572328 info@sbhi.ie Name
Post
Phone & Email
Andrea Fox
Reception
01 4572329
afox@sbhi.ie
Linda Morrison
Accounts
01 4572329
lmorrison@sbhi.ie
Katy McManus
Administration
01 4572329
kmcmanus@sbhi.ie
Sarah Jacobsen
Family Support Worker: Laois/Offaly; Longford/ Westmeath
085 7119062 sjacobsen@sbhi.ie
Hazel McGeough
Family Support Worker: Cavan/Monaghan; Louth/Meath; North Co. Dublin
086 8194790 hmcgeough@sbhi.ie
Katie Dunphy
Educational Officer
01 4572329 087 3792051 kdunphy@sbhi.ie
Clare Riordan
Family Support Worker: South Dublin/ Wicklow
01 4572329 087 2209625 criordan@sbhi.ie
Jane Mullane
Family Support Worker: South East including Waterford/Sth Tipperary, Carlow, Kilkenny, Wexford
087 6527175 jmullane@sbhi.ie
Aine Harrington
Family Support Worker: Mayo, Leitrim, Roscommon, Sligo, Galway
087 9395371 aharrington@sbhi.ie
Edel Browne Curran
Family Support Worker: North Dublin and Co. Kildare
01 4572329 086 8520616 ebrowne@sbhi.ie
Deirdre Gallagher
Family Support Worker: Cork/Kerry
086 8194791 dgallagher@sbhi.ie
Louise Healy
Manager Youth & Respite Services
01 4572329
085 7119087 lhealy@sbhi.ie
Helen Riney
Youth & Respite Co ordinator
01 4572329
hriney@sbhi.ie
Peter Landy
Fundraiser
087 7376351 plandy@sbhi.ie
SBHI Orthopaedic Footwear Centre National Resource Centre, Old Nangor Road, Clondalkin, Dublin 22 Phone: 01 4572326 Fax: 01 4056056 info@sbhi.ie Footwear Mobile 086 8517518 Contact: Karen Malone 01 4572326 kmalone@sbhi.ie
Dublin Branch: Vickie Green, Block 5, Unit 2, Port Tunnel Business Park, Clonshaugh, Dublin 17 Phone: 01 8485227 Fax: 01 8485228 Email: sbhidublin@gmail.com
SBHI Resource Centre: Alice Rajaratnam & Aisling Nic Eochaidh Block 5, Unit 1, Port Tunnel Business Park, Clonshaugh, Dublin 17. Phone: 01 8487311 Email: sbhiresourcecentre@gmail.com
www.sbhi.ie
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Golf Classic
PACKIE BONNER GOLF CLASSIC K CLUB AUGUST 2014 A total of 32 teams took to the beautiful Smurfit course at the K Club on the 22nd of August for our annual Packie Bonner Golf Classic. The delightful weather matched the mood of the participants as they took to the course for the 12.30pm shotgun start. The golfers commented on the fantastic condition of the course and enjoyed playing their 18 holes immensely. There were two competitions running side by side, the Packie Bonner Perpetual Trophy for qualifying teams and our main corporate competition. After golf everybody returned to the clubhouse for our customary after golf meal and presentations. Our patron Packie Bonner acted as the master of ceremonies and spoke very highly of his involvement with Spina Bifida Hydrocephalus Ireland and his reasons for supporting the organisation. The lovely meal was followed by an auction of donated items for which there was great interest from those present. We also had our customary blind raffle which was a great success on the night. The Packie Bonner Perpetual Trophy was won by the team: Donal Corbett, Brendan Casey, Liam Fitzgerald and Declan Keegan with a score of 99 points. Donal also won the longest drive competition with Joe Pardy picking up the prize for nearest to pin. The prize-winners for the corporate classic included: l 1st Prize (105 points): Alan Murphy, Jim O’Donoghue, Brendan Murphy & John Bermingham l 2nd Prize (104 points): Paul Boyle, Tommy Grindle, Darren Delaney & Liam Delaney l 3rd Prize (101 points): Eamonn Porter, Dave Nolan, Paul O’Reilly & Tom Watters l 4th Prize (99 points): John Kavanagh, Tommy Gaskin, Freddie Snow & Eugene Ward l 5th Prize (97 points): Fergal Britton, Aidan Gordon, Mark Doherty & Kieran Coffey l 6th Prize (97 points): Paul Landy, Kieran Mescal, David Minogue & Conor O’Donovan. SBHI wishes to congratulate the winners and thank all our participants and sponsors for their continued support of this event. n
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Some of the groups who enjoyed the day
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Health What is influenza (flu)? Influenza is a highly infectious, acute, respiratory illness caused by the influenza virus. Influenza affects people of all ages. Outbreaks of influenza occur almost every year, usually in winter. This is why it is also known as seasonal flu.
How serious is flu? Flu is often self limiting with most people recovering in 2-7 days. However, flu can be severe and can cause serious illness and death, especially in the very young and in the elderly. Serious respiratory complications can develop, including pneumonia and bronchitis, to which older people and those with certain chronic medical conditions are particularly susceptible. Pregnant women have also been found to be at increased risk of the complications of flu. Some people may need hospital treatment and a number of mainly older people die from influenza each winter.
How do people catch flu? Flu is a highly infectious illness. A person carrying the virus can spread the illness by coughing or sneezing. A person can spread the virus from 1-2 days before they develop symptoms and for up to a week after symptoms develop.
What are the symptoms of flu? Flu symptoms hit you suddenly and severely. Symptoms of flu include: n n n n n n
sudden fever, chills, headache, myalgia (muscle pain), sore throat, non-productive dry cough.
Is it seasonal flu or the common cold? It can be difficult at times to tell the difference between the common cold and flu. A cold is a much less severe illness than flu. The flu symptoms come on suddenly with fever and muscle aches. A cold usually starts gradually with symptoms of a sore throat and a blocked or runny nose. Table of Symptoms The following table provides information on how to distinguish between seasonal flu and cold symptoms:
Influenza (Flu) Source: H.S. E. Who is most at risk from flu? Anyone can get the flu but it is more severe in people aged 65 years and over and anyone with a chronic medical condition. Chronic medical conditions include chronic heart conditions, chronic respiratory disease, diabetes mellitus and immunosupression due to disease or treatment. Pregnant women have also been found to be at increased risk of the complications of flu. These groups of people are targeted for influenza vaccination.
Flu Vaccine – Who should be vaccinated? Vaccination is strongly recommended for: n Persons aged 65 and over n Those aged 6 months and older with a long-term health condition such as Chronic heart disease Chronic liver disease Chronic renal failure Chronic respiratory disease, including cystic fibrosis, moderate or severe asthma or bronchopulmonary dysplasia Chronic neurological disease including multiple sclerosis, hereditary and degenerative disorders of the central nervous system Diabetes mellitus Down syndrome Haemoglobinopathies Morbid obesity i.e. body mass index over 40 Immunosuppression due to disease or treatment, including asplenia or splenic dysfunction n Children aged 6 months and older with any condition (e.g. cognitive dysfunction, spinal cord injury, seizure disorder, or other neuromuscular disorder) that can compromise respiratory function especially those attending special schools/day centres with moderate to severe neurodevel-
n
n n
n n
opmental disorders such as cerebral palsy and intellectual disability on long-term aspirin therapy (because of the risk of Reyes syndrome) Pregnant women (vaccine can be given at any stage of pregnancy) Healthcare workers Residents of nursing homes and other long stay institutions Carers People with regular contact with pigs, poultry or water fowl. n
Symptoms Seasonal Flu Cold __________________________________________________________ Fever High fever lasts 3-4 days Rare __________________________________________________________ Headache Prominent Rare __________________________________________________________ General Aches, Pains Usual; often severe Slight __________________________________________________________ Fatigue, Weakness Can last up to 2-3 weeks Quite mild __________________________________________________________ Extreme Exhaustion Early and prominent Never __________________________________________________________ Stuffy Nose Sometimes Common __________________________________________________________ Sneezing Sometimes Usual __________________________________________________________ Sore Throat Sometimes Common __________________________________________________________ Chest Discomfort, Common; Mild to moderate; Cough can become severe hacking cough
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Marathon Man
12 Marathons – 12 Days A young man called Shane Finn from Dingle in Co. Kerry decided to run from Dublin to Dingle over 12 days covering 26.2 miles per day to raise funds for Spina Bifida Hydrocephalus Ireland.
By Peter Landy, Fundraising Manager SBHI
On the 3rd of June 2014 Shane departed the Phoenix Park in Dublin running his first leg to Celbridge in Co. Kildare. After completing the first leg successfully, Shane visited Andrea’s Fun Club members in Kill, Co. Kildare. Day 2 took Shane from Celbridge to outside of Kildare town having passed through Clane, Naas and Newbridge. Shane finished outside TP Watters Garage at 4.20pm. After day 2, Shane had a slight niggle in his knee and was brought to a physiotherapist living down at the Curragh camp. Our campervan also broke down on this day and was sent to the garage for repairs. Day 3 saw Shane run from Kildare Town to Tullamore, Co. Offaly. Once again he had by his side his father, Tim, on his bike, keeping Shane hydrated throughout his journey. At this stage, Shane’s knee was becoming a concern to the team as he was beginning
to struggle. Shane went for physiotherapy once again on his knee. His father Tim was very unfortunate having lost his brand new iPhone from his pocket while on route. A search party was sent out to try and locate the phone. Unfortunately, we had no luck.
Day 4 saw Shane running from Tullamore to Birr with his knee still giving him trouble. The road from Tullamore to Birr is particularly lonely as it has many long straight stretches. At the 5 miles stage, Shane had given up running and was now walking due to the pain in his knee. He continued to walk for a further eight miles, arriving into the village of Kilcormac at lunchtime in serious pain. This was Shane’s toughest day yet and Tim was seriously concerned as to whether or not to continue with the challenge. As Kilcormac is a very small village, we were worried there would be no physiotherapist available for Shane. However, thanks to a local businessman, Mr Doolan, who helped us to make contact with a local lady called Sinead who had a physiotherapy practice in Birr. Sinead agreed to come home to Kilcormac to see Shane. She worked on Shane’s knee for 45 minutes and at 2.30pm Shane set off again on the road to Birr still walking as his knee was quite sore. About four miles out from Kilcormac, Shane started to jog again and jogged all the way into Birr. He reported feeling good and his knee had improved
Shane Finn with Julieanne Bell, his Cousin Mary Evans and Anna Shinnors.
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Marathon Man thanks to Sinead’s work. Shane returned to see Sinead again that evening where she gave him another one hour session and to her credit refused to take any payment for her work that day. On day 5 Shane took off from Birr to a village outside of Nenagh called Newtown. He proceeded through Borrisokane where Shane was joined on the second half of his run by his aunt Clare Finn. We stopped in Nenagh town centre where a bucket collection was taken up before proceeding to the finish point at Newtown. Five done, seven to go. Day 6 took Shane from Newtown, Co. Tipperary, to Sixmilebridge in Co. Clare passing through Killaloe. It was a wet, showery Sunday morning as he took off in the company of Jim Breen, a long-term friend of Shane’s who joined him for this leg of the journey. As we passed through Ballina/Killaloe a large crowd had gathered for their annual pink ribbon day but of course we had thought they were there to cheer Shane on. Again our team of helpers took up a bucket collection through the crowd as we made our way to Sixmilebridge. Shane was joined by a group from the local athletics club on the last five miles of his journey. Day 7 took us from Sixmilesbridge to Adare, Co. Limerick. A local man from Sixmilebridge called Billy Cronin and his friend accompanied Shane into Limerick and out the Dock Road. Here, Shane was then joined by two girls from his running club in Dingle who had travelled to meet him and run with him to Adare. Day 8 saw Shane run from Adare to Abbeyfeale on a bright sunny morning. On this leg, Shane was joined by his best friend from Dingle who had travelled to meet him. At this stage, Shane was travelling very well and was beginning to enjoy the challenge. Today’s problem was a puncture to Tim’s bike which was repaired by a Kerry man in Abbeyfeale called Mickey Reidy. Again, no cost was incurred for this service. Katie Dunphy our educational officer interviewed Shane for our website. Eight down, four to go. The 9th day of Shane’s challenge saw him travel from Abbyfeale to Killarney and this saw Shane arriving into his native county for the first time since the challenge began. He posed for photos underneath the welcome to Kerry sign on the main road. It was quite noticeable that as Shane got into his own territory, he was running much stronger and knew that the end was now in sight. Again a group of friends from Dingle
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Shane with young members joined him on this leg of the run. This leg finished in the valley below Faranfore on the Killarney road. On a beautiful summer’s morning Shane started his 10th marathon heading to Castlemaine. Shane was seen off by Weeshie Fogarty, a well-respected radio presenter on Radio Kerry who interviewed Shane before he departed. First stop was Killarney town where Shane proceeded through the main streets, right though the town, heading towards Killorglin. Shane was now on top form as he arrived at our pitstop in Killorglin where he spent time greeting and talking to the locals. We left Killorglin through Milltown to the finish line in Castlemaine. Day 11, the penultimate marathon saw Shane travel from Castlemaine to Curaheen Church outside of Tralee. There was new and real excitement within the team as we all knew Shane was going to see this challenge through. We rolled into Tralee at 3pm to a fanfare outside of Garvey’s SuperValu and Shane was greeted by the Lord Mayor of Tralee and other local dignitaries. We left Tralee and completed the last three miles to Curaheen Church.
Day 12 brought Shane on his marathon from Curaheen Church to Dingle. A huge crowd had gathered at Curaheen on the Saturday morning. The crowd included cyclists, runners and supporters to cheer Shane home. We proceeded from there to Camp where we had our first pitstop of the day. We then continued to Shane’s home at Annacaul where he was greeted by family and neighbours. From there we proceeded to Annacaul village where the locals had arranged a presentation of the Tom Crean endurance medal to Shane. We then continued on to Lispole where again the local community rallied to cheer Shane on. The finish line was now in sight and Shane along with his business partner, Mark Evans, ran the last leg together to finish outside the WK Fitness premises in Dingle, Co. Kerry. Here, a crowd of over a thousand people had gathered to welcome Shane home. A total of €31,620 was raised by Shane and his family during this event. All associated with Spina Bifida Hydrocephalus Ireland wish to express our heartfelt gratitude for their efforts. n
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A Member’s Story
Catherine’s Story by Catherine Campbell – Mum to John aged 11 years with Spina Bifida Dromiskin, Co. Louth Our son John-Thomas was born on 18th February 2003. John was a full-term baby delivered naturally (in the Rotunda Hospital) and weighed 3.3kg.
opportunity is missed. A child of any age who has a disability requires a lot more time. It may be just simple, daily tasks that you and I take for granted or it may be that an hour each day is put aside for exercises, usually home-work will be slower and there are many more examples. Meanwhile cuts in social welfare benefits along with numerous new/ extra taxes and levies we all pay leave many families really struggling.
He arrived at 3.45am and I was shown the lemon shaped lesion that was situated on his lower back. By 9.30am John was in Temple Street Children’s Hospital with his dad, Michael. It was the longest, loneliest day of my life despite me being surrounded by a myriad of medics who all told me to get some rest.
There is huge financial pressure attached to having a child with a disability as in most instances one of the parents may have to give up working outside the home in order to become a child’s full-time carer or in most cases reduce hours at the very least.
Everyone (doctors, nurses, students, physio, social worker, paediatricians, counsellor) meant well but too many strangers in and out when all I wanted with me were not there. Following John’s birth I remained in the Rotunda for two more days. At 10.30pm that same night I received a phone call from an anaesthetist who wanted my consent to administer an anaesthetic to John in order to carry out surgery on his spine and repair/close the lesion. On discharge I went directly over to John in Temple Street. John was under the care of neurosurgeon, Mr. Prem Puri. Mr Puri and his team monitored fluid levels in John’s brain and as they were rising it was decided surgery to insert a shunt was the best way to proceed. The VP Shunt would run from the base of the brain and drain excess fluid via the stomach. This surgery was done on March 3rd when John was two weeks old. We both accompanied John to theatre and it was a most awful feeling handing over my new born baby. I cried helplessly. One week later, it was with great trepidation, and much anxiety and fear, we were allowed to bring John home. It was a joyous time also as I missed Anna (John’s two-yearold big sister) and was glad to get home to my own bed, clean shower and decent food. For the first year of John’s life we were visited regularly by a public health nurse and early intervention team (HSE Louth/Meath) and we saw a physiotherapist, speech/language therapist, O.T. and nurse. I got in contact with CRC (Central Remedial Clinic) in Clontarf and paid many visits there. To this day John attends paediatrician, Sandra Egan. The CRC was my life-line in the early years as I always knew if I had a
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Early days for John query/issue they would do their utmost to help us as speedily as possible. As the years went by John’s rate of development pleased all the professionals and we at home continued to work with him and encouraged him to reach all his milestones. I won’t deny it is not a smooth road and dealing with health professionals is not simple, although individual therapists and everyone John attends are always working to improve John’s quality of life and help him, as we do, reach and attain his goals – it is very frustrating to witness the manner in which monies were squandered and resources cut to the bare minimum in the disability sector, particularly in the good years when the socalled “Celtic Tiger” was running wild. It is shameful to see SNA hours being cut in schools and there are many, many more examples of how children with disabilities are being disadvantaged today. Parents face constant battles to get basic requirements /services for their children who are still not seen as equals in our society. If we look back in time yes we can say improvements have come but there is a massive leap needed to enable our children access a whole raft of services, mostly in the health and educational sector when they need it, not when it is too late and an
Going on holidays and other trips away requires much more planning both in terms of accessability and funding as it may take longer to ensure sufficient monies are there to cover all costs. Planning one-to-one activities with siblings is crucial and not as easy as it should be. Remembering to spend time away from the child with the disability is very, very important and at times it can be be overlooked or just too much effort, but they need you as well and, hard as it can be, sometimes we have to be able to ask for a dig out. Guilt is a wasted emotion. I know and preach it on occasion but from time-to-time waves of guilt wash over me when I think of my oldest girl and how the effect of having a sibling with extra needs has impacted on her. I don’t fret so much about John’s younger sister as she is a more robust, self assured and capable, carefree child. So, definitely having a child with special needs does impact greatly on the family. Today, John is 11 years old and heading into 6th class – his final year in mainstream primary school. He wears specially made orthotics or “splints” (John is cast for same in CRC and same are made and fitted on John in IDS Clinic, Cappagh Hospital). John mobilises with crutches but has a wheelchair for longer distances. He also has a younger sister Lily-Mae who is nearly seven years old. John likes school and always gives his very best. He finds the going tough but never wants to be seen or treated differently. He loves football and like any other 11-year-old dreams of becoming a pro-footballer. Chelsea is his no.1 team!!!
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A Member’s Story He gets on well socially with his peers, however play dates to friends’ houses are not nearly on a par with either of his sisters. John has continence issues and attends Mr. Fergal Quinn in Crumlin. He has an SNA at school who is now working a half day (three hours) due to cutbacks. Without her input and assistance, John’s schooltime would undoubtedly be far more stressful. To date we have been very lucky that John enjoys a good quality of life and his overall health is very good. It is a testament to the terrific hands of surgeon, Mr. Puri, that John has never required a shunt revision.
Cutting a dash – John with his dad, Michael
In summing up, my hope for John is the same as for my other two children – that they will all grow into happy, independent adults, who will go on to third level education and achieve whatever career path they want to pursue. For John, particulary as he is a sociable individual, I would like him to have one or two special friends/confidantes. I hope my children’s awareness and experiences of disabilities and people who struggle on a daily basis will enhance those people’s lives. On a more general level I would love to see those people we elect into powerful positions within Government put in place laws that will lead the way into a better, brighter future for all our children where, finally, all children will be cherished equally as is defined in our Constitution but not put into practice…yet. n
SAP employees who volunteered to paint the SBHI offices
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Sport
Wheelchair Rugby 7s
by David Griffith
Wheelchair Rugby 7s is a relatively new sport. Most of us have seen the Murderball style rugby on TV, however rugby 7s is quite different. There are scrums, conversions, drop goals and lineouts, not to mention the bone crunching tackles. There are seven players on a team hence the name – Rugby 7s. Each player has their own role but it is very much a team effort. Last year the Irish team travelled to France for the Six Nations and managed to win the Triple Crown. Since then the team has gone from strength to strength. The addition of highly experienced coaching and management staff has increased the quality of training sessions along with promoting the team. As it is a new sport, funding is extremely difficult to get so fundraiser events have been our main source of funding for trips and equipment. Due to the physicality of the game spokes commonly break and tyres puncture. The team recently competed in Liverpool at the Four Nations tournament where we were all surprised at the amount of tyre and wheel changes that had to be performed. Ideally we needed a Formula 1 style pit crew on the sideline. It was my first experience playing on the team internationally. I joined the team a year ago after the team won the Triple Crown. The team has a very eclectic bunch of players each bringing their own attributes. There is a very supportive and positive atmosphere on the team. We all support each other and pick each other up, sometimes literally.
Our hope is to get a provincial league started and increase the profile of the game in Ireland. We are always looking for new players to train with and play against. The game is open to everyone including ablebodied people. The team has hosted two come-and-try / fundraiser days in the Irish Wheelchair Association where friends and family could form teams, get in wheelchairs and try out the game for themselves. An able-bodied rugby team visited and they were all big, strong, fiercely competitive players. At the end of the day they had dominated all the other teams. They wanted to play the national team so we all warmed up and got on court. From the whistle we decided to go at them hard. We had kick-off and one of their players caught
the ball. He looked up and saw two of our players charging at him. All of a sudden this big rugby player quickly threw the ball away and curled up in a ball at the thought of receiving the inevitable tackle. It was hilarious. I think after the game they, and everyone else, gained so much respect for the team and disability sport in general. As a spectator sport it is an easy game to follow particularly if you like able-bodied rugby as the rules are very similar. We hope the team and the game will grow both nationally and internationally. To get more info on the Irish Wheelchair Rugby 7s you can find us on Facebook: https://www.facebook.com/WCRugby7sIRL or Twitter @ WCRugby7sIRL n
David Griffith (front row, centre) with the Irish Wheelchair Rugby 7s.
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Sport
25 OCTOBER
WORLD SPINA BIFIDA & HYDROCEPHALUS DAY The World Spina Bifida and Hydrocephalus Day reminds the public and policy makers that Spina Bifida and Hydrocephalus are a reality and increases awareness about Spina Bifida and Hydrocephalus to improve the lives of people living with these conditions. This year we are asking all branches to get as much publicity either locally or nationally for SBHI. The selling of our Torc Pins, wristbands etc will not only generate funds but also help to raise awareness.
Double Celebrations for Sean by Nicola Donnelly Sean Dunne with lady captain, Mary Comiskey, and Captain, Con Martin.
Double celebrations for Rush teen who is selected as Rush Golf Club's first ever Junior Captain… There were double celebrations for a young Rush teenager who was not only selected as Rush Golf Club's first ever Junior Caption but went on to win the Member & Child competition at the club on the same day. Sean Dunne (14) of Whitestown Road in Rush, Co. Dublin, who was born with Spina Bifida Hydrocephalus, did not get the best start in life after having 15 operations in 13 years. However, he has defied a lot of medical science and started walking at a young age after numerous operations. As contact sports do not suit him, he decided to take up golf four years ago and fell in love with the sport. Rush Golf Club member Sean Caldwell selected Sean, the son of Alan and AnneMarie, as his partner for the Member & Child competition which they went on to win. “It is a remarkable thing for a child who we were told when he was born would
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never walk and now here he is and playing golf,” said his proud mother, Anne-Marie. “He started playing golf and seemed to grasp it so much so that he takes lessons, takes part in a Junior Golf Club during the summer holidays and now he has been selected as Rush Golf Club's Junior Captain.” The St Joseph's Secondary School student was also invited by former Irish international soccer player Packie Bonner to take part in the former Irish goalkeeper's Annual Golf Classic for Spina Bifida Hydrocephalus Ireland at The K Club in August this year. “Sean actually met Packie when he was four years old as Spina Bifida Hydrocephalus Ireland asked Sean to do a photo shoot with Packie for an Easter fundraiser,” said Anne-Marie, adding that Sean actually commented a few years ago: “If Packie could see me now playing golf.” “So Sean was delighted Packie invited him to play at The K Club and afterwards Packie gave a speech and included Sean in it saying how everyone should have equal
opportunities and that the game of golf has now given this to Sean,” explained AnneMarie. “Sean was absolutely delighted when Dermot McNamara at Rush Golf Club, who is really involved in getting children to play golf, was part of the committee who nominated Sean for Junior Captain,” she added. An avid Liverpool supporter, Sean also takes part in DCU's CoderDojo, a computer club for young people to learn computer programming and develop Apps where, at the club's Coolest Project Awards, he received high praise for an app he is developing to monitor fluid intake. “Sean's condition certainly doesn't hold him back. He takes everything in his stride and is a very laid back teenager,” said AnneMarie, adding that Sean never says no to any challenge but knows his limits. We are all very proud of him. Sincere thanks to Nicola Donnelly for permitting us to use this piece.
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Positive Life Choices – My Say, My Way
Positive Life Choices – My Say, My Way agenda Friday 17th octobEr:
Saturday 18th octobEr (cont’d):
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9.00am–5.30pm EU Workshop in conjunction with IF ––––––––––––––––––––––––––––––––––––––––––––––––––––
3.00pm–3.45pm
7.30pm–-8.30pm
Opening Ceremony – Shane Finn / Meet & Greet –––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30pm–’til late Evening Entertainment: Organised by Youth Officers
Saturday 18th octobEr:
Typical Journey for a New Parent Dr. Margo Whiteford, Pediatrician Room No. 2 ––––––––––––––––––––––––––––––––––––––––––––––––––– 3.45pm–4.30pm
––––––––––––––––––––––––––––––––––––––––––––––––––– 8.00am–9.00am Breakfast: Mornington Restaurant ––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30am–9.30am Registration ––––––––––––––––––––––––––––––––––––––––––––––––––– 9.30am–9.45am
Conference Open Mr. Frank Larkin, Chairman SBHI Dr. Margo Whiteford, President IF ––––––––––––––––––––––––––––––––––––––––––––––––––– 9.45am–11.15am
Living with Spina Bifida / Hydrocephalus Shaymus Kennedy, James Bradley, Eamonn Cleere ––––––––––––––––––––––––––––––––––––––––––––––––––– 11.15am–11.30am Morning break ––––––––––––––––––––––––––––––––––––––––––––––––––– 11.30am–12.45pm Teaching & Learning for All Katie Dunphy, Education Officer SBHI Andrew Torrance, SENO, NCSE ––––––––––––––––––––––––––––––––––––––––––––––––––– 1.00pm–2.00pm Lunch: Soup, Sandwiches & Wraps ––––––––––––––––––––––––––––––––––––––––––––––––––– 2.00pm–2.45pm
Nutritional Therapy Caroline Henry Room No. 1
Behavioural Management – Young People with Hydrocephalus Joan Curran Room No. 2 ––––––––––––––––––––––––––––––––––––––––––––––––––– 2.45pm–3.00pm Afternoon break –––––––––––––––––––––––––––––––––––––––––––––––––––
Peer Support Group – Open Forum Facilitated by David Griffith Spina Bifida Hydrocephalus Only Room No. 1
OT Seating Facilitated by Dr. Rosemary Joan Gowran BSc (Hons) OT, MSc OT, PhD Lecturer Occupational Therapy Department of Clinical Therapies Faculty of Education and Health Science University of Limerick Room No. 1
Incontinence and its Social Effects Edel Browne Curran, Family Support Worker Room No. 2 ––––––––––––––––––––––––––––––––––––––––––––––––––– 6.00pm–7.00pm Mass: A reflective and celebratory mass ––––––––––––––––––––––––––––––––––––––––––––––––––– 8.30pm–12.00am
Conference Close Dinner & Evening Entertainment Hosted by SBHI Board of Directors Music by The Uptown Band ––––––––––––––––––––––––––––––––––––––––––––––––––– Andrea Fox:
Children’s Fun Club
Sunday 19th octobEr: ––––––––––––––––––––––––––––––––––––––––––––––––––– 8.00am–10.00am Breakfast: Mornington Room ––––––––––––––––––––––––––––––––––––––––––––––––––– 10.15am–10.45am Registration: AGM Voting Eligibility Registration ––––––––––––––––––––––––––––––––––––––––––––––––––– 11.00am–1.00pm National AGM: Hosted by SBHI Board of Directors ––––––––––––––––––––––––––––––––––––––––––––––––––– 1.00pm–2.00pm Lunch: Sunday Dinner
Programme subject to change. Early booking advisable. 12
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Positive Life Choices – My Say, My Way
Positive Life Choices – My Say, My Way biographies Shane Finn
Caroline Henry, BSc (Hons), MSc, Dip NT, mIANT
22-year-old runner Shane Finn, completed his 12th marathon in 12 days to raise money for Spina Bifida Hydrocephalus Ireland. Shane finished the epic adventure in his hometown of Dingle 506kms from his starting point in Dublin’s Phoenix Park on June 3. Shane is always looking to challenge himself and test his limits. "To be able to raise vitally needed funds for a great charity while doing so is a dream come true,” he said. His 12 Marathons 12 Days challenge was inspired by his his first cousin, Mary, who suffers from the condition. _______________________________________________________________
Caroline is a nutritional therapist based in Charlestown, Co. Mayo. After studying for an honours science degree at NUI Maynooth, she continued to pursue her studies at the University of Ulster, Coleraine, where she graduated with a Masters degree in human nutrition. After graduating in February 2014, she decided to set up her own nutritional therapy business where she regularly sees clients and makes presentations. ______________________________________________________________
Frank Larkin Frank, a member of the Donegal Branch, was elected as National Chairperson of SBHI in October 2013. A well-known Letterkenny man, Frank has been working hard over the last 12 months in conjunction with his board to continue to carry out the important work of the organisation. _______________________________________________________________
Shaymus Kennedy Shaymus is the Vice President and Chief Information Officer Information Technology for Europe, Middle East and Africa with AIG Insurance. Prior to joining AIG in 2012, Shaymus worked for Bank of America/Merrill Lynch, Capita and Xilinx Corporations. He has an honours degree in History from University College Dublin and a postgraduate Diploma in Management of Computer Systems from Trinity College Dublin. Living in Naas, Shaymus is married with one daughter. Outside of family and work his interests include supporting Munster Rugby, golf, wine tasting and military and Irish history. He previously held the world record for the longest continuous after-dinner speech, at 42 hours, done as a charity event. _______________________________________________________________
James Bradley Was born with Hydrocephalus in 1966. Schooling was very difficult and he left school at 16 not having completed secondary school. He took up an opportunity to study in England in 1991 and gained A levels. He then decided to do further study and undertook a degree in Tourism & Leisure. Upon returning to Ireland he undertook a MSc in Sustainable Development. _______________________________________________________________
Eamon (Amos) Cleere Amos would be considered as Ireland's most popular disabled DJ and over the years he has made a lot of fans. In 2008 “Improve Your Groove” was established as a label for DJ Amos to promote his work further and luckily enough it is still growing day by day. _______________________________________________________________
Kate Dunphy Educational Officer, SBHI. Kate’s main task is to increase knowledge and awareness in relation to the conditions Spina Bifida and Hydrocephalus by undertaking visits to preschools, schools, college/universities and to inform and educate teachers and employers. _______________________________________________________________
Edel Browne Curran Edel is the Manager of the Family Support team. She has a Bachelor of Arts (Hons) in Applied Social Studies in Social Care from St. Patrick's College in Carlow. She began working for SBHI in July 2004. Edel has a keen interest in improving the quality of life of members through a person-centred approach as a result of the experience and knowledge gathered through working with SBHI.
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David Griffith David is a member of SBHI and has been involved with the Peer Support Group since its inception. David is also a member of staff of SBHI. ______________________________________________________________
Dr. Margo Whiteford Margo is a Scottish paediatrician and now works as a clinical geneticist. She has a great knowledge of all the medical problems associated with Spina Bifida and Hydrocephalus. Margo was born with Spina Bifida and has served as Chair of the Scottish Spina Bifida organisation and is the current President of the International Federation for Spina Bifida and Hydrocephalus. ______________________________________________________________
Joan Curran Joan has worked as a psychologist with the National Rehabilitation Board, with Enable Ireland, and with St Joseph’s (now known as Child Vision), as well as spending a brief period in the National Educational Psychological Service. Her work has been mainly with children who have disabilities and their parents, especially children who are blind or who have visual impairments, children who have physical disabilities, and children who have sensory, physical and intellectual disabilities all together. ______________________________________________________________
Andrew Torrance Andrew Torrance, Special Educational Needs Organiser (SENO). Working within NCSE for nine years, initially in Dublin, his current caseload covers schools in East Meath, Central Louth , Ardee and Dublin 7. He has experience of teaching in both mainstream schools and specialist provision, at primary and secondary levels. Prior to moving to Ireland, he was Deputy Head Teacher of a large special school in North Lanarkshire, Scotland, catering for the range of needs of children and young adults requiring additional support for learning. ______________________________________________________________
Dr. Rosie Gowran Rosie is a lecturer in Occupational Therapy (2003-present) at the University of Limerick. Prior to this she worked as a therapist, with experience in the public, private and voluntary sectors. Rosie has specific interests in occupational empowerment, human rights and sustainable healthcare policy development, implementation and provision. In 2008 she was awarded a 3 year Health Research Board Therapy Fellowship and completed her doctoral studies, ‘Building a Sustainable Wheelchair and Seating Provision Community, Meeting People’s Primary Needs Now and in the Future’, utilising a soft systems approach. As an action academic Rosie promotes the use of stakeholder-centred research which is connected to real world issues. She is committed to facilitating sustainable solutions involving community of practice partnerships at a local, national and international level. In 2013 Rosie was awarded Clinical Research Associate of the Year at the Irish Medical Times 12th Healthcare Awards as lead researcher on stakeholdercentred project to develop a support service strategy for people living with EB in Ireland.
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Education
Educational Officer Update necessary and appropriate. SBHI has been extremely grateful for all of the help and support provided by SAP. I have met with many of the staff on multiple occasions and have to commend them on their professionalism, especially as many of the staff who have worked on the website have done so as part of their voluntary hours or in their own personal spare time!!
SCHOOL SESSIONS: The 2014 academic year has the potential to be even busier for the Educational Officer with school visits planned in many areas of the country. The educational presentations / sessions with school staff include emphasising the teaching and learning implications of Spina Bifida and/or Hydrocephalus as well as creating greater awareness about the conditions Spina Bifida and/or Hydrocephalus. The teachers have found it useful to discuss teaching strategies and ideas that would facilitate the inclusion of children with the condition in all aspects of the curriculum and school life. This year, following training, the Educational Officer has additional information in relation to Aistear (the new early childhood curriculum framework for children from birth to six years in Ireland) for preschools, junior and senior infants. This incorporates a learning through play methodology. If you would like the Educational Officer to visit a preschool, school or college/university in your region please do not hesitate in contacting her using the details provided under Katie’s photo on this page. In addition to school visits the Educational Officer will be running awareness sessions in Educational Centres in many areas of the country.
SBHI PEER SUPPORT: The Peer Support programme was first highlighted at the 2013 SBHI Conference and AGM in Sligo. Since then SBHI Peer Support has been going from strength to strength. We have a number of volunteers trained in becoming a peer supporter and the phone line was made live in 2014. Like a
Don’t forget also that this is YOUR website so if there is something you want to share with others please do not hesitate in contacting the Educational Officer.
DISABILITY AWARENESS AND PRESENTATION SKILLS COURSE: Katie Dunphy, Educational Officer Spina Bifida Hydrocephalus Ireland Phone: 087 3792051 Email: kdunphy@sbhi.ie lot of programmes starting off it was slow to begin with but has slowly been gathering momentum and with great delight I can say that a number of members have availed of SBHI Peer Support and benefitted from it. The key to peer support is that is is a listening service for members, by members of the association. This year we have a few sideline projects in the pipeline. These will be launched soon so watch this space (or at least watch the website, www.sbhi.ie)
WEBSITE REDEVELOPMENT: The website redevelopment was quite a challenge in the end with the sheer volume of information to be relocated to the new website and updated where
This is a new course that will be set up in various branch areas around the country for interested members. This training will involve working together as a group to create the ideal presentation to deliver to schools and/or colleges to create greater awareness about Spina Bifida, Hydrocephalus and Folic Acid. This training will also involve individuals working on their presentation skills in order to be able to deliver the training in your own local areas. This training will ideally take place over a weekend or three mid-week evenings. This is a great opportunity for members (individuals with Spina Bifida and/or Hydrocephalus, parents, carers or family members) to work on their own personal development and gain confidence in speaking in front of a group. This training will be undertaken in various areas BUT it will depend on interest from members. So if you are interested please contact the Educational Officer using the details provided on this page. n
Results of National Research Project: ‘Investigating the Health and Therapy Needs of Children with Spina Bifida in Ireland’ Sarah Governey, Eimear Culligan, Jane Leonard Temple Street Children’s University Hospital Further details on www.chu.ie
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News
Special Needs Bank Account A question I have been asked so many times: Is there a Special Needs Bank Account? The answer is, YES there is. Most parents find it very complicated to open, operate and manage a bank account for someone with special needs and parents eventually run in to numerous issues. I’ve had families tell me shocking stories such as one family where their son who has an intellectual disability had his bank account cleaned out and his parents were unaware. Banks have also refused to open up accounts for many of my families as they state that the person with special needs does not understand the terms and conditions. I ask who does!
Financial Wellbeing Solution
To open the account…
A Special Needs Bank Account allows both parents to legally manage the account on behalf of their child. Having full access to the account the parents can make decisions on their own or jointly with their child, depending on his/her ability to manage their own financial affairs.
A parent needs to complete the application form on behalf of their child with special needs and produce two forms of identification (passport, driver’s licence, proof of address, etc). The application form also needs to be signed by your child’s doctor or a doctor’s certificate can also be attached to provide evidence of their disability.
In to this account you should direct your child’s Domiciliary Care Allowance or Disability Allowance. I recommend keeping all other entitlements out of the account such as Carer’s Allowance, Respite Care Grant and having those payments put in to the parents’ personal bank accounts.
When speaking to parents I find most have opened joint accounts with their children but this is only a temporary fix and will cause issues when the parent passes away as this account will have to be frozen and goes back in to the Estate.
From the Special Needs Bank Account you should pay for your child’s medical needs such as any private therapies, equipment, health insurance, hospital, doctor and consultant visits. You should also use this account to pay for your child’s personal needs such as phone, hobbies, clothes, entertainment and eating out.
An even bigger issue is when the Department of Social Protection is carrying out a means-tested assessment then all money in a joint bank account can be allocated to either party.
Keep your bank statements and do not shred them at any stage. The statements will be used when applying for entitlements and will show proof of the financial position of your child.
When opening the account you should also request a laser card, cheque book, standing order forms and direct debit facilities. You must also ask for DIRT exemption to be applied to the account. This will prevent the government taking 41% as a tax on any interest achieved on the account. Contact your local bank and they can guide you through the process. If you are one of the many families that already have a Financial Wellbeing Trust Plan then I will be personally contacting you soon to supply you with the specific forms and to guide you through the process. – Dolores, Financial Wellbeing Services.
Me and My Backbone Me and My Backbone: My Journey with Spina Bifida is due to be published by Book Hub Publishing in November. Book Launch 7th November, 2014, venue: Clare County Council HQ at 6pm. “My main goal in writing my story is to show that there is always a positive side to every challenging situation. There is always a bright side to life and my motto is, ‘Keep Smiling Always’. It’s been a crazy journey for me since I was brought into the world but I have chosen not to take life too seriously and so I try to live my life with a bit of humour, no matter what the world throws at me. Each developmental stage in life brings its own challenges. I want to show that even though I have Spina Bifida I got myself out of a dark place and am living a happy and normal (whatever that is!) life. “It was a dream of mine for many years to tell my own story. Now, as a young twentyeight-year-old woman, I hope that my story gives strength and courage to young parents faced with similar challenges as mine faced, and to those with Spina Bifida themselves. “Indeed, how we respond to challenges makes us who we are. My message to readers is: ‘We must never underestimate human potential.’” Me and My Backbone: My Journey with Spina Bifida is due to be published by Book Hub Publishing in November. Book Launch 7th November, 2014. Venue: Clare County Council HQ at 6pm. Facebook page: www.facebook.com/pages/Siobhán-MungovanAuthor/281132122082703 n
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Peer Support
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News
Are you facing difficulties accessing your treatment ? Please report them to EURORDIS reports which will be available) the existing problems to the National Health Authorities and engage in a dialogue. EURORDIS does not have the resources to respond to individual cases; they will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website.
To improve access to care, EURORDIS needs your cooperation! 23 July 2014, in line with this year's theme of Care, EURORDIS HAS LAUNCHED A SURVEY to gather information about the difficulties people with rare diseases and conditions face with regard to accessing their treatment. They invite you to share your experiences, which they will use in their advocacy work and lobbying at national level. Are personal payments creating financial difficulties? Are there long waiting lists? Is the type of treatment or care you need not available close to where you live? What is the impact on your health, on your quality of life? Please take the time to fill out
the EURORDIS questionnaire. It is available in 19 European languages. The collected data will be processed by trained staff in order to point out (via the
Founded in 1997, the European Organisation for Rare Diseases (EURORDIS) is a non-governmental, patient-driven, alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 600 rare disease patient organisations in more than 50 countries, covering more than 4,000 rare diseases. For more information: www.eurordis.org n
SHINE 2014
Members and volunteers enjoying a day out
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SHINE
SHINE 2014
The entertainer
Sorting out the creases
Nothing biting
Captive audience
The city is in safe hands
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Hey horse!!!!
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Around the Country
Around the Country MAYO/ROSCOMMON/LEITRIM/ SLIGO/GALWAY/DONEGAL SUCCESS IN THE KITCHEN We started our three-week cookery course earlier in the year which our members from the Sligo area attended. Evelyn, a qualified cookery teacher, ran the course in the community hall in Sligo, where she supported the members to learn how to cook. On average 4/5 members attended the course and they all said they loved it. Each night the members had to cook and prepare their food with some support from Evelyn. The members gave suggestions for what they would like to cook the following week, however you can’t get too adventurous with only two hours. They had a love-themed night on February the 12th to mark Valentine’s Day, with heartshaped cookies, and beautifully decorated plates. These classes are something that we would like to run again in the future.
Cookery Class – Sligo.
SUMMER SOCIAL IN SLIGO Some members from Sligo arranged a Social Weekend in Galway. The weekend kicked off on Friday afternoon when we travelled to The Connaught Hotel where, on arrival, we chilled out for a couple of hours. That evening we had a lovely three-course meal in the hotel restaurant which had a wonderful atmosphere as everyone enjoyed watching the World Cup. Following dinner we enjoyed a lively music session in the bar. Next day we hit the shops in Galway city. We all attended the Greyhound Track in Galway and enjoyed dinner and a bit of a flutter on the dogs. It was a lovely summer’s evening and we retired back to the hotel and enjoyed some of the entertainment. The following morning we had a lovely breakfast and said our goodbyes. This weekend was a lovely opportunity to get
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A night at the dogs – Galway. together and have fun, but also to discuss different struggles that people may be experiencing. The Connaught Hotel where we stayed is a
beautiful hotel which is situated just outside Galway city, it is fully wheelchair accessible and the staff could not do enough for us.
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Around the Country SKINCARE PRESENTATION DAY A Skincare Presentation Day was held in Donegal in the Bluestack Foundation, where we heard about the importance of maintaining skin integrity. This turned out to be a very informative day where members learned a lot about the importance of skin preservation and how to prevent pressure sores and wounds, they also got an opportunity to ask lots of questions. The handout had lots of useful information. This information is very important to anyone who is likely to get a pressure sore, and unfortunately a lot of people who have limited mobility or use supports to support their mobility are at a higher risk of developing one. If you would like a copy of this handout please contact me.
The Titanic Experience
TITANIC EXPERIENCE Sligo and Donegal/Letterkenny members attended a day trip to the Titanic Experience in Belfast. We all met up in the Café in the Titanic building, where we enjoyed a lovely lunch. Following lunch we had a semi-guided tour around the Titanic experience. They explained everything about the Titanic. We also got an elevated rollercoaster ride around some of the experience called the shipyard ride. This is an electronic dark ride that uses special effects, animations and full-scale reconstructions to recreate the reality of shipbuilding in the early 1900s. This was both fun and educational. We had a lovely time and the experience was enjoyed by children, our adult members and parents. – Aine Harrington
A night at the dogs – Galway.
DUBLIN The Dublin Branch have had a busy time organising a Charity Golf Day which was hosted by Dun Laoghaire Golf Club in June. It was a magnificent day with almost 200 golfers playing, followed by a BBQ in the sunshine. Great generosity was shown by all and the Branch raised over €11,000! We are also continuing with churchgate and shopping centre bucket collections which are a struggle as we need more volunteers, please contact Vickie in the office if you can help. Contact your local church and see if they'll allow you collect after mass one weekend (if you are permitted to collect inside the gate you
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do not need a Garda permit). Let us know and we'll help out. During the summer, twenty-nine Dublin members attended SHINE camps and two went on the Away Week. Many members also helped as volunteers. The camps were very well run again this year and everyone had a fantastic time. Our Drinks Night (last Saturday each month in the Red Cow) is becoming more and more popular. The monthly lunch outing (second Saturday each month in a city centre hotel) is also back after the summer. If you have not come to either of these social outings in the past we would
urge you to come as it's great to get together and both are very informal and relaxed. We can arrange transport for most of those attending. The "Clonshaugh Crew" club for teenagers (aged 12 upwards) is back up and running. The club is great fun, featuring sport with Brian and computer projects with Aisling. We're planning an "interactive nutrition workshop" before Christmas and a makeup/colours evening. Contact Vickie in the Dublin Branch office 01 8485227 for more information and JOIN IN! n
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Around the Country INDEPENDENT STRIDES The Independence is an adaptive saddle with adjustable and removable headrest, backrest, forearm supports, hand grips, Peacock Irons, and a safety release system. This therapeutic saddle features a prompt reduction technology that gradually allows more independent sitting on horseback by riders with special needs.
LOUTH - MEATH
Adapting and supporting according to the needs of each individual, The Independence saddle and its prompts allow a person with severe physical challenges to sit safely and independently astride a horse, while the traditional physical dependency on sidewalkers is dramatically decreased. The Independence saddle offers both safety and versatility, and is adaptable enough to accommodate riders of varying sizes, disabilities and/or injuries. Once the rider's needs are evaluated, prompts will be determined and provided as needed. Head and back supports provide head and trunk control. Adjustable forearm supports stabilise the arm and shoulder girdle, allowing the rider to lean slightly forward into a functional sitting position. Hip supports stabilise the pelvic girdle. As the rider gains strength, and goals are achieved, prompts may be removed. The special needs saddle gives a sense of accomplishment. As a Class 1 medical device, it provides physical, occupational, and psychological therapeutic opportunities. The Independence saddle offers each rider an immeasurable sense of success and self-fulfilment, maximising his or her quality of life.
Shane and Ryan, members of the Louth Meath Branch, enjoying the Independence saddles
KILDARE
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Teresa Conroy with last year’s winner, James Kavanagh, presenting Alan Murphy with the John Paul Conroy Club 2000 Person of the Year replica shield.
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Around the Country
SOUTH EAST “Hi everyone, as most of you know Judy Long has finished up as the Family Support Worker in the South East. My name is Jane Mullane and I have taken over the position. I am delighted to have been given the opportunity to work with Spina Bifida Hydrocephalus Ireland and I look forward to meeting everyone in the upcoming months. Over the next while I intend to get in contact with as many members and their families as I can to arrange home visits, clinics, social outings, and/or information seminars that would be useful to our members and families. I understand that there are counties that
do not receive as much contact as others and also that there are areas that do not have branches set up. I would like to set up some more support in these areas over the coming months. This will only be possible if feedback is provided from the members and their families within these areas. My main base will be in Wexford town and you can contact me on 087-6527175 or jmullane@sbhi.ie should you need to. “ Looking forward to seeing you again at the AGM. If you need anything else, just get in touch. Kindest Regards, Jane Mullane.
Jane Mullane ®
Annie enjoying the Easter day out
Saoirse Nolan at pony riding
The Wexford gang at pony riding
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Around the Country
Aoife Flood at pony riding
Alex Hatton enjoying pony riding
The Flood family having a race in Kia Ora Mini Farm
The Kinsella family enjoying Easter crafts
The Wexford group on their Easter day out
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O rthopaedics
Spina Bifida Hydrocephalus Ireland - Providing orthopaedic footwear and associated orthotic appliances for over 20 years
ABOUT US he SBHI Orthopaedic Footwear Centre was established in the mid 1980s. Its initial purpose was to provide an efficient service to its members in acquiring suitable orthopaedic footwear and appliances. It subsequently expanded its services to include all aspects of orthopaedic footwear, including specialist shoes designed for diabetics.
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SERVICES The main services provided at the Centre are: All aspects of orthopaedic footwear and orthotic devices An extensive range of fashionable, orthopaedic shoes for children Orthotic supports for sports injuries A full repair service. The footwear can be made to measure, or quality off-the-shelf footwear can be tailored to meet specific requirements. The centre offers a wide variety of styles to suit every occasion and for all ages. All work is carried out by fully qualified Orthopaedic Technicians.
COMFORT AND STYLE The SBHI Orthopaedic Footwear Centre supplies a range of footwear and appliances that have all the required orthopaedic features for a perfect fit; the footwear also retains a large element of style which is so important to all our clients.
SELF-CARE OF FEET 1) Check for any breakdowns (i.e. pressure sores, ulcers, blisters)
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particularly under the toes and the base of the feet at least once or twice a week. Hint: use a mirror if needed to inspect the feet. Possibly check your feet after showering. What you should look for when inspecting your feet: Any redness and change of colour Swelling that is not usually present Any break in skin, especially on the soles of the feet Any accumulation of hard skin on the soles of the feet Any other problems which may occur 2) Be very careful of banging or knocking feet when transferring. 3) Make sure you have supportive fitting shoes in order to prevent friction sores or blistering. 4) After showering ensure that your feet are dried properly (particularly between your toes).
from a Doctor or Physiotherapist/ Occupational Therapist. Private clients do not need a referral.
CLINICS Regular clinics are held at the following locations: SBHI National Resource Centre, Clondalkin, Dublin 22 St. Michael's Houses throughout Dublin Cheeverstown House, Templeogue, Dublin 6w. A fully-trained Orthotist is in attendance at all clinics to ensure accurate fittings and mouldings. Private clinics can also be catered for. To make an appointment get in touch with us via our contact details below.
ENTITLEMENTS People who are covered under the Medical Card/Long Term Illness Scheme may be entitled to services free of charge on condition that they meet the requirements of the HSE. The Centre offers advice on these entitlements, in a sympathetic, efficient and friendly manner. First-time clients availing of our services under the Medical/Long Term Illness Card must have a referral letter from a Physiotherapist, Orthopaedic Surgeon or Occupational Therapist. Repeat clients must have a referral
CONTACT US: ORTHOPAEDIC CONTACT US: FOOTWEAR CENTRE Orthopaedic on 01 457 2326.
Footwear CEO: George Kennedy, gkennedy@sbhi.ie, 087 915 7613. Centre
Manager: Lorna Whelan, Telephone: lwhelan@sbhi.ie, 086 851 7518.
01-4572326 Administrator: Karen Malone, kmalone@sbhi.ie, 01 457 2326 w w w .sbhi.ie