Tŷ Hafan Cwtch Autumn/Winter 2016

cwtch

newsletter autumn/winter 2016

our news and stories from tyˆ hafan

growing memories that last a lifetime inside

our super sibs p.4

parents strut their stuff p.11

max’s story p.14

cwtch

our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

welcome Welcome to the autumn/winter edition of Cwtch.

We are all part of Team Tyˆ Hafan. From the families who use the service, the staff who work at the hospice, our head office, in the shops or in the community to everyone who buys a Crackerjackpot lottery ticket, gets showered in paint at a Rainbow Run, sets themselves incredible fundraising challenges, volunteers for us or sends us a donation, we are all one community.

Tyˆ Hafan means so much to so many people across Wales and we have to thank each and every member of Team Tyˆ Hafan for helping us to provide care and support for families that have to live with the unimaginable prospect of not seeing their child, grandchild or sibling reach adulthood.

Every year, we are amazed at the lengths that the people of Wales will go to so that Tyˆ Hafan can continue to be there and help make a short life a full life.

We hope that this edition of Cwtch gives you an insight into how your support helps and why it means the world to our families.

Thank you so much for your support.

contents a new garden project launched with charity bike ride...........................02 our super sibs....................................................................................................04 ‘there ain’t no party like a tyˆ hafan party!’...................................................04 our superheroes...............................................................................................05 a day in the life of a complementary therapy practitioner....................06 “tyˆ hafan is a lifeline for families”...................................................................09 emporium tyˆ hafan online launches...........................................................10 parents strut their stuff........................................................................................11 a summer of fun for team tyˆ hafan .............................................................12 max’s story...........................................................................................................14 our lottery group of 385....................................................................................16 tyˆ hafan raffle......................................................................................................17 new for 2016 scratchcards..............................................................................17 christmas crackers.............................................................................................17 every £1 makes a difference...........................................................................17 an all-star fundraising effort............................................................................18 thank you team tyˆ hafan.................................................................................19 leaving our mark...............................................................................................20 caerphilly mayor breaks fundraising records...........................................20 children do what they do best for team tyˆ hafan.....................................21 taking the rainbow on the road....................................................................22

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a new gard

launched wi The wonderful grounds where the hospice now sits were first obtained back in 1993.

The picturesque setting, nestled between lush green farmland and the Bristol Channel, has been a large part of what makes Tˆy Hafan the place it is.

In the build up to our 18th birthday in 2017, engineering provider Costain VINCI has joined us in a new partnership and will be designing and constructing a new state-of-the-art garden in the grounds of the hospice.

The new garden will transform the current area. Children will continue to be remembered in the new garden and Tˆy Hafan is working with families to make this happen. The space will

autumn/winter 2016

“The garden will provide a tranquil, contemplative space for parents and family members.”

den project

ith charity bike ride also feature therapeutic and social elements for families and hospice staff to enjoy.

Carol Killa, Tˆy Hafan's Director of Care, said: “We help and support more and more children year on year and we are in urgent need of work to expand and develop this part of our garden.

“The garden will provide a tranquil, contemplative space for parents and family members as well as providing a stimulating and fun place for the children and their siblings to interact in safety.”

To help kick-off fundraising for the project, a team of cyclists from Costain VINCI took on an epic 370-mile bike ride that started at the hospice and ended in Paris, just in time for the riders to celebrate Wales’ historic quarter final win against Belgium at Euro 2016.

27 cyclists, accompanied by six support drivers, pedalled around 120 miles a day on their way to the finish at the Eiffel Tower.

Barry Woodman, Project Director for the Costain VINCI Joint Venture, said: “The proposal to redesign and develop the garden and surrounding woodlands at Tˆy Hafan was well within our skill sets and those of our design partners at Arup and Atkins. We are really pleased to be supporting this outstanding children’s charity.”

Work on the project is due to start soon and will include a memorial garden, an enchanted woodland, a viewing platform and sensory features such as musical instruments and ‘bug benches.’

Since 1999, Tˆy Hafan has supported 689 life-limited children and their families from across Wales. Tˆy Hafan takes it support into the family home and is there to help families through every step of their unimaginable journey. To continue to offer its unique service to families, it relies on the public’s generosity, its corporate sponsors and volunteers.

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our news and stories from t yˆ hafan

029 2053 2199

our super sibs Children’s Hospice Week, the UK’s only fundraising and awareness week for children’s hospice services, took place between 23 and 27 May. Over 660 families have used the services of Tˆy Hafan since it opened its doors in 1999 and Children’s Hospice Week is vital for highlighting the importance of the services we provide these families and the struggles they must endure every day.

The theme for this year’s national Children’s Hospice Week (May 23 – 29) is ‘putting families first’ to highlight how children’s hospices like Tˆy Hafan help families treasure their precious time together.

Part of Tˆy Hafan’s unique service is to support every family member, including siblings.

Some of our inspirational siblings have shared their thoughts on how we support them: Nathan Keen, 18, from St Athan, said: ”I like the sibling days that Tˆy Hafan puts on because as a sibling with a disabled brother it just helps take your mind off all the struggles at home. I have been going to the sibling days for years now and have had loads of fun and have made some amazing memories and it has given me so much confidence.

have sick children. They have supported me and my family through the whole time we’ve been going there.”

Kelcea Sainsbury (aged seven from Ebbw Vale) said: ”Why I like coming to Super Sibs is because it's fun and I get to meet other siblings that I can talk to and relate to.

It’s important to me as I can experience new things and know I’m not alone with the support of Super Sibs.”

Faith and Teigen Matthews (age nine and eight from Cardiff) said: ”We attend Tˆy Hafan because our brother Rhys has Hypoplastic left heart syndrome (HPLH). We enjoy Super Sibs as it gives us time by ourselves for fun and staying at Tˆy Hafan means that we get more alone time with our mum, while Rhys is looked after.”

”I find that by going to Tˆy Hafan you don't have to go through your struggles on your own! And they support the families that

‘there ain’t no party like a t yˆ hafan party!’

Children’s Hospice Week is always busy, always a lot of fun and always culminates with one of our (in)famous hospice parties. Highlights this year included a fantastic performance by a ukulele band and a water fight in the sunshine with rugby star Jamie Roberts, with guests wearing fancy dress, of course!

Children and families also spent time with Dirty Sanchez star Matthew Pritchard, Paralympic champion Mark Colbourne, Cardiff Devils player Jake Morissette and former player Mark Smith who all got into the party spirit for the afternoon.

Jamie Roberts said: ”I’m here at Tˆy Hafan in Sully celebrating Children’s Hospice Week across the UK. I have just had a water fight – I think I came off worse!”

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www.tyhafan.org

autumn/winter 2016

our superheroes You’ve probably heard us describe the children who use our services as superheroes and, despite having conditions which mean they are unlikely to reach adulthood, they often possess the strength and courage that you would find in movies and comic books.

Aaron Dutson, who lives in Chepstow, has Duchenne Muscular Dystrophy (DMD) – a severe muscle wasting condition affecting around 100 boys in the UK each year. His family have nicknamed him ‘Hulk’ because of the steroids he takes for his condition.

And thanks to photographer Geraint Williams from Bridgend, Aaron and other children who came to our Fun Fest were transformed into their very own superhero personas.

Aaron’s mum, Cat Morris, said: “Aaron is our own little superhero and we’re incredibly proud of him.

Aaron faces his condition with incredible bravery and continues to achieve much more than expected.

“He is such an outgoing and confident boy. He loved the photos and so did his little brother, Jacob. The pictures are really different and it’s another lovely memory we can treasure from Tˆy Hafan.”

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

a day in the life of a complementary therapy practitioner

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At Tˆy Hafan, we use complementary therapies such as massage and relaxation alongside conventional medical treatments to help relieve symptoms and promote both physical and emotional health. We sat down with Complimentary Therapist, Abi Tong, to learn a little more about her role at Tˆy Hafan.

I’ve been part of the complementary therapy team for the last three years. We offer treatments to the children, parents or carers, and other family members. These sessions are given in the hospice or in the family home, at school and in a hospital.

We adapt the sessions to meet the needs of the person receiving the treatment. One day it could be stress relief, the next could be focussing on symptom management and another on introducing touch to a child who has never experienced it outside of a medical context.

A general outline of a day can be difficult to describe as they vary so much but I will try to give you a general idea.

I tend to get to work between 8.00 – 8:30am. Most of the resident families are still asleep at this point so it gives me a chance to read my e-mails, write notes and catch up on admin – the boring bits!

After I have finished that, and unless we have a team meeting or an event to plan, I try to head out on to the floor. I can quite often be found wandering with a bottle of oil and collection of towels tucked under my arm. With the children and young people it is often difficult to set a time for a treatment as things can change quite quickly and not always to schedule – but I try to make myself known and get a rough idea of those that would like to receive a treatment. The sessions

might be done in the lounge or a bedroom – sometimes in the multi-sensory room, but the aim is to tailor them to that person.

One session could be really upbeat and playful, another much more soothing and relaxing. If for some reason I am very pressed for time, it may be that a group story massage is suggested – this is a lovely treatment using a simple story with associated massage strokes that I have never known anyone not to enjoy.

It may be that there are resident family members who would like to receive treatments too. We try to fit everyone in and generally a firmer time can be set with parents or carers as they have a more stable schedule.

If I have an outreach appointment, I may have to defer some treatments to the next day – but I always try my utmost to capture all interested parties. The treatment session is performed in exactly the same way as it would be in-house, tailored to that person’s specific needs. Depending on when an outreach session has fallen during the day, I may either move on to another nearby location, head back to the hospice or head straight home.

I leave for home between 4.00 and 4:30pm generally. Somewhere – roughly in the middle of that – I try to eat my lunch.

Each and every day is different and poses new obstacles but I love being able to overcome them as best I can.

What’s the best thing about your job?

It’s probably a bit clichéd, but I learn something from each and every one of our families and feel that I get to use my skills in an environment where they are truly valued by the people on the receiving end.

What’s the most challenging aspect of your job?

There are challenges varying in scale every single day, but perhaps the hardest part is dealing with family members experiencing grief. Tˆy Hafan is generally a place about life and living – at the times when we are reminded of the sadness that can be associated with what we do here, it can catch you off guard.

What has been the most memorable experience during your time at Tˆy Hafan?

One of my most treasured moments was the first time that a child asked to see me themselves. They chose me – I hadn’t been to offer a session yet, or even seen them that morning, but having had a treatment in their previous visit they asked to see me again. And that was really special.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

autumn/winter 2016

“t yˆ hafan is a lifeline for families” Seven-year-old Ollie Taylor from Cardiff has proven he’s a little fighter after defying doctors expectations that he wouldn’t survive beyond two years.

His mum, Sian, first knew something was wrong when she was 33 weeks pregnant and a scan picked up an abnormality with Ollie’s brain.

When Ollie was born, he wasn’t breathing and he had to be resuscitated three times.

Sian said: “I never got to enjoy him as a baby. Right from day one there were thousands of appointments.”

Ollie has Wolf-Hirschhorn Syndrome – a genetic condition caused by a deletion of material within the fourth chromosome.

“His condition affects him in many, many ways,” said Sian.

“He has low muscle tone. He can’t feed, can’t chew and has a poor swallow. He has a hole in his heart. He has a small head, slow growth and also suffers from epilepsy.”

Tˆy Hafan’s support was first offered to the family in 2010, providing relief for Sian, her husband Simon and their eldest son Isaac.

“I really think we needed a break because I hadn’t slept properly and had been up

every hour during the night. Since Ollie was born, we have been checking on him hourly for seizures, doing continual feeds as well as caring for the needs of his three-year-old brother. We definitely needed a rest,” said Sian.

The short-break care at the hospice enables the family to spend quality time together and unwind from the stresses that come with caring for a child with complex, round-the-clock needs.

“It is relentless. All day and night and all week long, which is why visiting Tˆy Hafan is so important for us as it’s something to look forward to,” said Sian.

“This is why we want Ollie to reach his full potential, whatever that may be.”

Despite his problems, Ollie is enjoying life and charms everyone he meets with his adorable smile.

“He has a happy life and he makes people around him happy,” said Sian.

“He has a very magnetic personality and there is something very lovely and special about him. He loves Tˆy Hafan so much.

The staff adore him and he has such a wonderful time when he’s there. We can’t thank Tˆy Hafan enough for everything they do for us.”

Sian can’t imagine her life without Tˆy Hafan in their lives.

“It is a lifeline for families,” she said.

“I think it saves marriages. It keeps families sane and helps make family life possible.

“Tˆy Hafan helps create positive memories. The reality is that he has a life-limiting condition.

“It is a lifeline for families. I think it saves marriages. It keeps families sane and helps make family life possible.”

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our news and stories from t yˆ hafan

029 2053 2199

emporium t yˆ hafan online launches You know the feeling. The one you get as you’re browsing the shelves of your favourite charity shop and you come across something unique, something you just know was put there for you to find and fall in love with. We love those moments and are constantly on the lookout for items with a story all of their own, just waiting to be found.

Well, we wanted to bring our customers that same feeling when they did their online shopping! Our eBay store is a real treasure trove of the old and the new and its success has led us to expand our online offering with the launch of Emporium Online and Emporium Etsy stores.

Our Emporium stores in Cowbridge, Abergavenny and Cardiff have been lauded for their innovation and elegant vintage styles and Emporium Online has this same boutique feel, offering an array of vintage, retro and designer goods alongside some unusual curios.

And while browsing the shelves and rummaging the racks in the stores is all part of the charm, being able to find these wonderful bargains from your own home or even on the move while supporting a great cause at the same time will change the way you think about online shopping.

So have a browse you may just find a treasure!

If you have any retro, vintage or collectable items which you think would be perfect for our Emporium online stores, please get in touch with one of the team at onlineshop@tyhafan.org, visit one of our 31 shops in Wales or our retail distribution centre in Bridgend.

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Find Emporium online by visiting tyhafanshop.org

www.tyhafan.org

autumn/winter 2016

parents strut their stuff Having first met at a vintage fashion shoot at the hospice, Micaela Turner and Catherine Morris have become great friends through the mums’ group. They jumped at the chance to strut their stuff on a catwalk with other Tˆy Hafan parents Emma Lidbury and her daughter Mila, Emma Talbot, Brad Watson and Huw Liddel.

The models rocked vintage outfits from Tˆy Hafan’s charity shops, as well as stunning 1950s dresses and rockabilly outfits by Cerys’ Closet in Kenfig Hill.

Micaela, from Cowbridge, said: “It was fantastic.

I really enjoyed being pampered and the outfits were gorgeous. I was quite nervous on the catwalk and just laughed the whole time!

“It was really lovely to share the experience with Catherine. We met at the Tˆy Hafan fashion shoot and just clicked straight away. It’s so nice to make friends with someone who is going through the same thing and understands what it’s like having a life-limited child.”

Micaela’s son, Cai, suffers from Vici Syndrome, a rare condition affecting only 19 people in the world, and is the oldest living child with the condition.

Cai, aged seven, needs round-the-clock care and can’t walk, talk or eat on his own, but faces his condition with such bravery.

“He is the happiest child,” said Micaela.

“All he does is laugh! He is so intelligent and communicates with us through a computer.

He is such a little character. He loves Tˆy Hafan.

They do so much with him when he visits. It’s also great for my husband and I as it’s the only time we can go abroad on holiday, knowing Cai is being well looked after.”

Catherine’s sevenyear-old son, Aaron, has Duchenne Muscular Dystrophy, a severe muscle weakening condition.

Around 100 boys in

the UK are born with Duchenne Muscular Dystrophy each year and there are around 2,500 boys living with the condition at any one time. Life expectancy can vary but many boys do not live beyond their teens.

Catherine from Chepstow said: “Aaron is doing so well and is still riding his bike every single day. He is a cheeky little chappy and is very confident. He also has a very caring and sensitive side. We are so proud of him.”

“If I ever need anything, I know Tˆy Hafan is always there,” said Catherine. “Katie, who looks after the mums' group is fantastic and really supportive. She arranges events for the mums, like the Bath shopping trip, and it’s a great way for us all to relax and have fun. I really enjoyed the fashion show. The best bit was getting picked up and twirled around on the catwalk – it was a lot of fun!

“It has been great to meet Micaela. She is fantastic and we had a great time at the fashion show. We have already arranged to meet again in the summer with the kids.”

Micaela added: “Many people think Tˆy Hafan provides all their support at the hospice, but it is so much more than a hospice. There is such a fun and social aspect to Tˆy Hafan, like with the mums’ group. It really helps us feel supported and it’s lovely to feel part of the Tˆy Hafan family.”

The fashion show was held at the Hi-Tide in Porthcawl in aid of Tˆy Hafan, Dogs for the Blind, Paws and KRUF, which are the Mayor’s charities this year. The money raised from the fashion show and other events throughout the year will be divided between the four charities.

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our news and stories from t yˆ hafan

029 2053 2199

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a summer of fun for team t yˆ hafan There really is something for everyone at a Tˆy Hafan event.

The welsh3peaks provides a challenge for adventurous types, Rainbow Runs are perfect for the colourful amongst us and the Taff Trail will push you and your team spirit to the limits.

Our first ever Rainbow Run in Swansea kicked-off the year spectacularly as a record-breaking 1,700 runners finished the 5k fun run, covered head to toe in multicoloured powdered paint.

One of the colourful characters who took part was 69-year-old Rod Hughes from Neath. He said: “I’m an elderly gentleman of nearly 70 and it was the first fun run I’ve done since having a serious injury six years ago.

“It was a wonderful event – I’m still coming down from how amazing it made me feel! My bathroom was all multi-coloured afterwards but it didn’t matter one bit.

Tˆy Hafan is a wonderful charity and I can’t wait to take part in the next one.”

to climb Snowdon, Cadair Idris and Pen y Fan, all in less than 15 hours.

Barry Island, another first, was next up for our rainbow tour. One fundraiser who took part was Claire Jones from Barry, whose five-year-old daughter Hallie Mae suffers from a rare genetic condition called Cri du Chat (cat’s cry) Syndrome and was referred to Tˆy Hafan in 2013.

The participants battled the worst that the Welsh weather could throw at them and still came down the final mountain with smiles on their faces.

“Hallie loves the playground, the swings, the play room and she loves music, films and dancing. She has a wonderful time at Tˆy Hafan. She visibly relaxes when she’s there and that’s so important.

“I love it as well. We get spoilt rotten and it’s like you’re being waited on. We can just chill out and it’s nice for Hallie because she can just chill as well.”

Singer and presenter, Connie Fisher, also took part and described the event as “amazingly fun.”

Now in its 18th year, the welsh3peaks challenge is a favourite with our dads’ group. ‘The Scrambled Legs’, a team made up of a group of dads, joined 82 other teams

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One of the dads, Huw Liddell from Barry, said: “The event was a great experience because I was able to see first-hand all of the amazing people who went out and stretched their bodies and minds to the limit, all to make Tˆy Hafan possible. Thank you so much.”

The next Rainbow Run came inland and up the valley to Parc Bryn Bach in Tredegar. The park setting gives the event a completely different feel to its seaside siblings and the community really embraced the party.

Our Jungle Book themed Family Fun Day was a fantastic mix of family activities including fairground rides, storytelling and riveting reptiles, while also being a great opportunity to showcase the services we provide our families.

There are still a number of exciting events to go at the time of writing, including the Taff Trail Cycle Challenge, our Rainbow Run in Pendine and the return of Carols in the Castle where we kick off Christmas in style with a celebration at Cardiff Castle on 1 December.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

max’s story When parents Martina and Glyn Harding fundraised for Tˆy Hafan in the early stages of their relationship, they never imagined they would need the charity’s services six years later.

The couple were so excited to be expecting their second child and couldn’t wait to give their two-year-old daughter, Mila, a little brother or sister.

Martina had a normal pregnancy and on 17 January 2016, the couple welcomed baby Max to the world – a lovely surprise for the family as they were told they were expecting a girl.

But their joy quickly turned into worry as the couple noticed Max was floppy and had difficulty breathing.

“It was like he was out of breath. He felt so floppy in my arms and he also had a weak cry,” said Glyn.

When Max was examined by a doctor at eight weeks old, the GP knew something was seriously wrong and an ambulance was called to take him to the Royal Gwent Hospital.

Glyn said: “I called Martina to ask how the check-up went and she said Max was put on oxygen and was rushed to the hospital. We were hoping that it wasn’t anything too serious at that point. We thought maybe he needed steroids for bronchitis.”

It took over a week for the couple to be told the devastating news that their son had an incurable life-limiting condition called Spinal Muscular Atrophy (SMA).

“When we understood more about the condition we were heartbroken,” said Martina.

When they were first told about Tˆy Hafan, the couple were apprehensive about receiving support from a hospice, but wanted to take any help offered to them.

As soon as the family stepped through the doors, their fears faded away.

Glyn said: “The staff are amazing and you realise you aren’t alone. It is the most beautiful place and we were made to feel so welcome.”

The charity has helped the family create precious memories together, which they’ll be able to cherish forever.

Martina completed our Tredegar Rainbow Run with an army of her family and friends, raising an impressive £3,319. On 9 September, Glyn cycled 180 miles from the Severn Crossing and arrived at Tˆy Hafan to be welcome by staff, who gave him a big cwtch and some refreshments and has raised just over £3,000 so far. The couple are planning to continue their fundraising efforts, which they’ve named ‘The Max Affect’ for Tˆy Hafan and the SMA Support UK. Max sadly lost his battle to SMA in May this year. This beautiful tribute, titled 'Our Journey' and written by Glyn, was read out at his celebration of life.

Our journey…

From the day he arrived, he brought so much joy.

Our expected second daughter, born our beautiful blue eyed boy.

A surprise so intense, like a punch that packs.

We already had a name and that name was Max… little Max. Our puzzle complete, a perfect pigeon pair.

Such happiness, elation, could his big sister share.

Life was perfect, the way it should be.

It’s what everyone wants, the “ideal family”.

A disappointing introduction for Welsh Rugby’s newest fan.

His first six nations, disaster, an English Grand Slam.

It’s the way of life, happiness and sorrow but nothing could prepare us, for what was to follow.

Max was ill, diagnosed, SMA type 1.

Never heard of it, what is it and why our son!

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What now, what next, then, Tˆy Hafan calls.

Its where care and cherished memories, floods its halls and its walls.

“Life is not about waiting for the storm to pass, but learning to dance through its rain”.

That’s what the walls say.

A place where a short life, is a full life, each and every day.

An extended family, there, to guide you by, Helping you come to terms with that impossible question, why?

Max continued without fuss, like an act of denial.

With a glint in his eyes and that flirtatious smile.

Time had come to not to continue the fight and take his place within the stars at night.

Forever in our hearts and thoughts he’ll remain.

Knowing that someday we’ll be together again.

autumn/winter 2016

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our news and stories from t yˆ hafan 029 2053 2199

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our lottery group of 385 We were delighted to invite a very special group of lottery players to Tˆy Hafan in August.

385 people have been playing the Crackerjackpot lottery since the very first draw back in July 1998, contributing over £350,000 to Tˆy Hafan.

To acknowledge their generosity and commitment to Tˆy Hafan, an inscribed gold apple was placed on our Gift Tree.

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tyˆ hafan raffle Thank you to everyone who took part in our 2016 Summer Raffle.

We had a fantastic response with over 3,500 people buying tickets, which raised nearly £50,000 for Tˆy Hafan. The winning tickets were drawn at the hospice on 23 June 2016 by Sarah and James Griffiths whose daughters, Molly, 13 and Emily, 10 use Tˆy Hafan’s services.

christmas crackers Add a little excitement to your Christmas table this year with a box of Tˆy Hafan Christmas crackers. In addition to the usual gift, hat and joke, two crackers in each box also contain a Tˆy Hafan scratchcard with the chance to win up to £1,000.

Available in our shops now.

Congratulations to Mrs Joan Lewis of Kidwelly who won the top prize of £3,000.

The Christmas Raffle is open! Buy tickets online at www.tyhafan.org/raffle

new for 2016 scratchcards We’ve just launched a scratchcard game to help raise funds for Tˆy Hafan.

With the chance to win between £1 and £1,000, scratchcards are a fun and easy way to support Tˆy Hafan and there is a one in four chance of winning a prize. Costing £1, the scratchcards make ideal gifts, stocking fillers or even wedding favours!

For more information, visit www.tyhafan.org/scratchcards or call 029 2053 2300.

every £1 makes a difference Thank you so much to all our lottery players for your continuing support.

Your weekly £1 entry into the lottery draw helps Crackerjackpot contribute nearly £1 million towards the £4 million Tˆy Hafan needs to raise every year.

If you would like to play the lottery, visit www.lottery.tyhafan.org or call 029 2053 2300.

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an all-star fundraising effort We love to ask our supporters to do what they do best when they fundraise for Tˆy Hafan.

Whether you are a master chef who wants to host your own pop up restaurant or a daredevil challenging yourself with a thrill-seeking skydive or abseil, we all have unique talents that can help raise money to help make a short life a full life.

This year, a group of local ice hockey fanatics teamed up to represent Tˆy Hafan at the UK Forum All Star weekend, a charity tournament for amateur players, and use the money raised to pay for a day of care.

It currently costs £10,958 every day to provide care and comfort for children with life-limiting conditions and their families.

The Tˆy Hafan All Stars, captained by James Pepper, had no hesitation in naming Tˆy Hafan as their chosen charity, but a visit to the hospice and meeting beautiful little Scarlett really helped inspire the team to step up their fundraising efforts.

James said: “If we weren’t already motivated enough to raise a load of money for

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Tˆy Hafan, along came our mascot, the beautiful Scarlett. Scarlett, her mother Clair and father Chris are regular visitors to Tˆy Hafan and having spoken to them about how important the hospice is to them, we started to spread the word.

“I would like to say a massive thank you to my team mates who have raised a fantastic amount of money for Tˆy Hafan, given up their time to arrange fundraising events and supported me wherever possible. So give the team a cheer when you see them on the ice.”

By the time of the tournament, they really had produced an all-star performance, smashing through and

more than doubling their target, with the count at time of writing being a staggering £24,027.47. An incredible achievement by some all-star fundraisers.

“If we weren’t already motivated enough to raise a load of money for Tyˆ Hafan, along came our mascot, the beautiful Scarlett.“

autumn/winter 2016

thank you team t yˆ hafan Thank you so much to everyone who donated to our Summer Appeal. Your incredible support meant that we managed to raise a fantastic £13,568.

Your lovely, heartfelt messages to our families on the back of your daisies were inspiring and we are in the process of joining them together to make a huge daisy chain. They will be put up in the hospice for families, staff and visitors to read and are sure to bring lots of smiles to people’s faces.

When Clair and Chris were finally able to take their baby girl home for the first time, they felt more like carers than parents, spending all their time just trying to keep her alive. When Hayley, their Tˆy Hafan Family Support Worker who they met in hospital, encouraged them to visit the hospice, they began to feel like they’d be able to cope.

Clair, Chris and the beautiful Scarlett kindly shared their story for this appeal and described how Tˆy Hafan helps them to cope.

For the first time, they felt like a proper family. Scarlett, now two years old, loves to visit the hospice and is treated like a princess while mum and dad have the opportunity to relax, recuperate and catch up with some much needed sleep. Thanks to our fantastic supporters like you, we can continue to support families in Wales, like Scarlett’s, and help them to enjoy their time together and make memories that will last a lifetime.

Scarlett was diagnosed with an unbalanced translocation of chromosomes seven and ten, a condition so rare that there’s no name for it. Her condition caused her a great many difficulties and led to several long months in hospital as she was too poorly to go home.

Thank you

“In more ways than I can explain, Tyˆ Hafan means we’re no longer alone.”

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our news and stories from t yˆ hafan 029 2053 2199

www.tyhafan.org

leaving your mark The memories we make form an intangible but lasting impression on those with whom we share our lives. Whether those lives are short or long, we all leave our mark.

Philip Trevor Rogers, a lifelong Liverpool fan and supporter of Tˆy Hafan, sadly died on 25 August 2015. He will be remembered by his friends and family for the memories he shared with them, but will be remembered by the Tˆy Hafan family for his incredible generosity in leaving a legacy donation of £124,862.79 to the charity.

Your kind donations support children with life-limiting conditions throughout Wales

caerphilly mayor breaks fundraising records Councillor Leon Gardner has spent his year as Mayor of Caerphilly being a fantastic supporter of Tˆy Hafan, one of his charities of the year.

His charity launch evening was incredibly successful, raising £4,000, and a charity walk added another £1,800 to the total.

Numerous fundraising events during the year, including concerts, raffles and book sales, donations from local community groups and sales of pin badges, helped increase his total to £17,619.20, the most ever raised by a Caerphilly Mayor, with just over £8,800 going to Tˆy Hafan.

Councillor Gardiner said: “I’m overwhelmed by the support for this charity appeal and, as a supporter of Tˆy Hafan for many years, was delighted to raise so much during my year as Mayor”.

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autumn/winter 2016

children do what they do best for team tyˆ hafan Ffion-Wyn Davies, aged eight from Pontyberem, has been desperate to help people less fortunate than herself for the last three years.

After watching YouTube videos of people who had cut their hair for charity, she decided to donate her hair to the Little Princess Trust and raise funds for Tˆy Hafan .

Ffion-Wyn’s family had a history of fundraising for Tˆy Hafan when a family friend, Nia-Wyn, died at the age of 31. Her love of children prompted them to raise money for a charity they knew was close to her heart.

With the help of the local community and a social media campaign on overdrive, Ffion-Wyn and mum, Sioned, managed to raise £1,500 to share between the two charities by cutting off 11 inches of hair to be made into wigs for children with cancer.

Ruby Bloomfield is nine years old from Penarth and is an expert cake baker! She wanted to put her skills to good use and sell her cakes to raise money for Tˆy Hafan.

On 23 July, this enterprising young fundraiser set up a craft stall at Pugh’s Garden Centre, ran it herself, and absolutely smashed her £20 target. With a lot of hard work and some very tasty cakes, Ruby raised an amazing £138.

Ruby stole the heart of Laura Thomas from the fundraising team when she gave her a business card and a flapjack. Look out Mary Berry, we’ve found someone sweeter and she’s got the talent to go far!

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our news and stories from t yˆ hafan 029 2053 2199

www.tyhafan.org

taking the

rainbow

on the road Whether we are decorating the hospice with the flags of all the Olympic nations or spraying hundreds of rainbow runners with gallons of powdered paint, Tˆy Hafan is always a colourful place. This year, the fantastic people at Fast Parts Wales decided to take the rainbow on the road.

The Fast Parts Family Rainbow Rally is the brainchild of Nathan Travis and his team at Fast Parts Wales – an independent garage based in Cwmcarn. Having taken part in numerous fundraising activities for Tˆy Hafan ranging from performing in pantomimes to daring sky dives and raising £6,000 in 2015, Nathan learned that it costs £10,958 to provide care and support to the families who use our services every day and pledged to raise enough money to pay for a day.

Nathan said: “We were eager to create an event that enabled everyone, from adults to children, to get involved. After meeting with Natalie, our Tˆy Hafan Regional Fundraising Manager, we began to get plans underway to ensure everything was in place to pull off this big event.

“Anyone who has visited the hospice is sure to be moved by the bright, colourful and touching environment provided for

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the children. We felt strongly that this vibrancy should be celebrated in our fundraising activity and, therefore, added the ‘rainbow’ theme to the rally. We decided that participants in the rally would have a budget of £300 to purchase a car and paint it in rainbow colours, being as creative as possible.”

The rainbow racers left Fast Parts in Abercarn on Sunday 1 May and headed out west, taking on challenges at designated pit stops on their way to Oakwood Theme Park, before reaching Tenby Football Club were they camped for the night. The home leg the following day saw the participants take on some fundraising activities on Barry Island on their way to completing the rally at the hospice in Sully.

Nathan said: “We’ve had an overwhelming response to this event and we are thrilled that our industry has got behind the charity.

Each pound donated will help Tˆy Hafan

develop and provide a warm and nurturing, life-changing environment in which the children can relax and find pleasure.

Tˆy Hafan is an incredibly worthy cause and we’re extremely grateful to everyone who has donated or got involved in any way with the event.”

It was a fantastic sight seeing a convoy of brightly coloured vehicles pull up outside the hospice, accompanied by dozens of smiling faces as they were met by Tˆy Hafan families and staff.

The event captured the imagination of the Welsh public, as well as the competitors and the target of paying for a day was totally eclipsed, with the Rainbow Rally raising an astounding £21,928, enough to pay for two days! Congratulations to Nathan and everyone involved in the Rainbow Rally.

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please help us make a short life a full life...

1. Your gift I would like to make to families single donation of: in Wales

£15

£25

or I would like to make a regular donation of:

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I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. This declaration also relates to all donations I have made to Tˆy Hafan in the past four years and all donations I make hereafter until I notify you otherwise.

Please return this form to Tyˆ Hafan, Hayes Road, Sully, CF64 5XX You can also donate at www.tyhafan.org or by calling 029 2053 2255

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dads get cheeky for 2017 calendar Tyˆ Hafan dads have stripped off for our official 2017 calendar to raise awareness and vital funds for the charity that means so much to them and their families.

The calendar is available online or from any of our Tyˆ Hafan shops. Visit tyhafanshop.org to purchase this Christmas’ must-have stocking filler.

Without our fantastic supporters like you, we simply couldn’t continue to provide the very best of holistic palliative care for all the children and thier families in Wales that need us.

#DadsBareAll the hospice for children in Wales yr hosbis i blant yng Nghymru