Raising Awareness for Finns Foundation

If I asked you to think back over the past 40 years potentially you could cite a great deal of change…. possibly you would gasp in the horror that I presume you are old enough to remember this far back or reflect that you actually are….hopefully you would smile either way. Well, even though we’ve seen a great deal of change in the world since the 1980’s, one thing which sadly hasn’t seen any change is the prognosis of the terminal condition DIPG. Thankfully, there is something you can do RIGHT NOW to make a change, and that is chose to learn about DIPG and educate others on it and perhaps even support a wonderful charity which works with families affected by terminal conditions, such as DIPG, called ‘FINNS FOUNDATION’. I first discovered this little known condition, DIPG, when a lovely colleague of mine, Joanna, wrote her ‘heart’ contribution on our wards heart shaped ‘rainbow of hopes and dreams for 2021’. Alongside the

by Natalie McCulloch

inevitable ‘be mask free, see my family, have a haircut’ posts of this challenging year, was Joanna’s ‘Educate people on DIPG’. I couldn’t help but query what DIPG was, and I was instantly touched by her tale and hopeful that I could help in some small way through writing this and helping to raise awareness. DIPG (Diffuse instrinsic pontine glioma) is a type of high grade brain tumour which originates in the area of the brain stem called the pons. The pons is responsible for numerous critical bodily functions including breathing, swallowing, eye sight and heartbeat, so it goes without saying that the effects of a tumour there are devastating. DIPG is in fact the leading cause of death from paediatric brain tumours and almost exclusively affects children. According to St. Jude Children’s Research Hospital the most common symptoms related to DIPG include the following: • Problems with balance and walking • Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision) • Problems with chewing and swallowing • Nausea and vomiting • Morning headache or headache that gets better after the child vomits • Facial weakness or drooping (usually one side) (https://www.stjude.org/) Sadly there is no explanation as to why certain children develop this tumor and the survival range has a median of just 8-11

months after diagnosis. Joanna is Finn’s mum and one of the founders of the phenomenal ‘FINNS FOUNDATION’ which raises money for families with terminally ill children. Sadly, Finn passed away in 2018 just four weeks short of his 13th birthday after being diagnosed with DIPG just 3 weeks prior to his 12th birthday. Heartbreakingly, his family were told there is nothing to save him, given medication and told to ‘make some memories’. Joanna and her families strength is illustrated beautifully on their website as they tell of the devastation which hit their family and the incredible enduring strength, courage and love from their beautiful smiley boy, Finn, throughout. She states “He would say “I can beat this”, our hearts would break at this as we knew that there was only a 1% chance that he would, but his smile would carry us through.” Finn’s family are continuing his strength by giving hope, light and love to others via a foundation set up in his memory. Finn’s Foundation has been created to give cash grants to families of children with terminal illness or a life threatening disease to spend how they see fit. For some it may ease the burden of financial worries that accompany a terminal diagnosis, provide a child with a much welcomed gift or help them create memorable times together on holidays or day trips. Supporting Finns foundation need not be monetary, although obviously

every donation makes a huge difference, but just by raising awareness and educating yourself and others you can make a difference too. Joanna tells me “80% of the monies raised is given to families with terminally ill children and 20% to research. We hope one day they will find a cure for this awful illness” There is a 1% chance of a child surviving this dreadful condition but a 100% chance your donation and support will make a huge difference to them and their families. They are selling badges for just £3 each to support the charity. Please check out Finns Foundation at www.finnsfoundation.org.uk/ or follow them on twitter, facebook or instagram.

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