WILL, THE CAVERNOMA SAILOR
In April 2019, Will’s life came crashing down. He was 12 and enjoying his life, particularly with his love for sailing and school. We were on holiday in France when he collapsed and had a prolonged seizure. He was rushed to the local hospital and then after a CT scan transferred again to a specialist children’s hospital in Paris. He was diagnosed as having had a Haemorrhagic stroke and after lots of investigations they discovered cerebral cavernous malformations (CCM). His bleed left him with a brain injury and epilepsy, at which point they then repatriated him to Great Ormond Street Hospital for brain resection.
After further investigation, the neurosurgeon at Great Ormond Street raised concern over the impact of the surgery on Will’s sight and hearing. He decided that he required further investigation before making a decision on the next steps. Will was discharged with a mountain of appointments booked at multiple hospitals and lots of epilepsy drugs. Most devastating however was him being told he could no longer sail, swim, bath, ride a bike and so many more everyday things. Will hit an all time low, living with epilepsy and poor mental health. He felt his world was over.
Cavernoma was a whole new world to us and we spent a few weeks wading through the darkness of the internet’s ‘worst case scenarios’ before we found the guys at the Cavernoma Alliance UK and our Roald Dahl Specialist Nurse, Kat. They gave us some light, direction and above all, compassion and a shoulder to lean on. We met other families through a Cavernoma Alliance UK event and Jo at Cavernoma Alliance UK shared with us the realities of Will’s diagnosis.
After some really dark times Will was determined to get back on his feet. With some great support from his team at his school and guidance from his nurse he went back to lessons and life began to get back to some sort of normality.
Sailing was his life and he wasn’t ready to give up! He was resolute that just because there’d never been an epileptic sailor before, that doesn’t mean it wasn’t possible. He badgered his nurse, consulted with the guys at Cavernoma Alliance UK and contacted RYA Sailability. The nurse and RYA Sailability wrote a risk assessment and agreed that with adaptations, he should be given the opportunity to get back on the water. That was the easy part! We then had to convince the sailing clubs that he could still compete in mainstream sailing. It’d not been heard of before and understandably, they were risk averse.
With a lot of determination and no dispensation from the clubs and organisations (because they’d never had to before and didn’t know how too!!) Will got back on the water. He wasn’t seizure free and we had a few nightmares, but his determination won out and he carried on. He made it all the way to the Nationals and then, with a lot of persuasion, managed to get his place back at the World Championships in Sweden (still with no dispensation). There he competed for five days, losing one and half days to seizures, but still managed a very respectable 44th!
Since then Will’s determination has soared and so has his resolve to ensure that others enjoy sailing. He has been back on the water locally with his Sea Scouts teaching other young people. Lockdown hasn’t stopped him either, with no sailing to be had, he taught himself to windsurf and now enjoys paddle boarding in the harbour. His determination has seen him awarded the Rotary Great Britain and Ireland ‘Sporting Hero’ 2020 and a finalist in the BBC Operation Ouch Child of Courage.
Not only has he channelled his determination into his sport, he has been tirelessly fundraising and has made over £2000 for Roahl Dahl Specialist Nurses and another £700 for GOSH. His charity work hasn’t stopped there, he is also passionate about food poverty and has spent time volunteering and campaigning for our local food bank.
So where next? After further investigations, MRIs, CTs, EEG’s with Telemetry, lots of drug regime refining and multiple hospital visits, Will is now on the list for surgery to remove the two most pesky cavernomas and calcification. It’s not without its dangers, his cavernomas sit snuggly in his optical pathway in his left temporal lobe. COVID has seen surgery delayed whilst the amazing NHS professionals concentrate on battling this challenge. But he’s ready when the time comes and determined to get through this, with the support of his Specialist Nurse, the Cavernoma Alliance UK team, his school and friends and family. He is not letting fear get the better of him and as far as he’s concerned, he’s all about Ability over Disability.
You can follow Will’s story on his twitter @TheCavernoma ‘The Voyage of a Cavernoma Sailor’