Meet William. He’s a funny, bubbly little boy who loves the water. He has a mummy, daddy and little brother, Eli, who love him very much. Sadly, he may also have a short life. He has a serious condition called Angelman syndrome – a neurogenetic condition that causes physical disabilities, as well as having very severe epilepsy and life-threatening seizures. All this on top of a life-limiting lung condition too.
Every day can feel like a struggle when you’re caring for a seriously ill child like William, with no let-up – fighting to get the equipment you need to keep him safe, housing adaptations to make sure his needs are met and caring around-the-clock. His mum says “most things are a battle.”
Thankfully, our charity partner, Together for Short Lives, is there to support them every step of the way – providing vital information and help when they need it, as well as raising money for the UK children’s hospices, just like their local service, East Anglia’s Children’s Hospices (EACH), who give the family an absolute lifeline.
William and his family have been shielding since the pandemic began, but around this time last year, we were able to give his family the gift of family time, with a special Center Parcs break:
Water baby
It will come as no surprise that William’s favourite place to be whilst on holiday was in the pool! Mum, Emma, reflects on their first day saying “William loved the jets and the rapids but wasn’t happy about leaving the pool.” We know that feeling!
And their relationship with the water just grew and grew – Emma says William “made lots of friends in the pool with his constant laughter and giggles.”
Emma tells us there were some incredible firsts too – including being able to walk by himself using a woggle in the pool: “William learnt this week to walk in the shallows with the woggle, and has just grown in confidence even more in the water. He’s pretty much as unaided as any three year old could be on a woggle now, explored the waterfall, played with the floor vertical jets, went down slides, crawled through tunnels into water and spray, and genuinely just lived his best life! He even managed to stand on my hands and we braved an underwater swim!”
Putting William first
Caring for William is non-stop and sometimes the things he needs to keep him happy and well are not straightforward. We were so pleased to hear that the family felt like everything was catered for them and more when they stayed with us.
Emma said “Nothing was too much trouble and they went over and above in so many ways to accommodate us – from lovely servers going shopping for us to make sure William had something that he could eat with his special diet when we went out for a meal; to a super-fast laundering service after a (cough-cough) poo-splosion overnight.
It was so refreshing and emotional in a world where everything is hard fought for! Even the ladies at Guest Services knew him by name and we’d often swing by for a chat.”
Memories to last a lifetime
“We literally had THE BEST time ever.”
Here’s what it all comes down to. When time is short, families like William’s deserve the chance to make the most of every single moment together. From some much-needed down-time for mum and dad at the spa to amazing family times in the pool, they were able to spend less time worrying and more time making memories.
Emma sums it up perfectly when she talks about William having a little nap on his last day – something that would usually ring alarm bells for the family with his condition, but having experienced such a packed, fulfilling time together, knew they could rest easy in the knowledge that William was just plain tired. “It’s not often William falls asleep randomly, let alone out and about. In the past it’s been a bad sign, today we just knew he realised it was the end of a long week and time to just shut his eyes!”
Please help us to ensure every family caring for a child as poorly as William can make the most of their time together and create memories to treasure.
We’ll continue helping these families enjoy that precious time together as much as we can. By making a donation today, you will help provide a lifeline for families who care for seriously ill children – now more than ever.
www.togetherforshortlives.org.uk/donate
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