Alexander, is nine years old. He loves life, family and school. “He was always the very definition of healthy,” says Rhonda, his mum and Coney Hall resident. “Christmas 2020 our hearts were broken and Alexander’s life was shattered. I had rushed him to our local A&E after his second seizure, and we were given the devastating news: Alexander had a brain tumour.”
It was a highly aggressive, high grade Glioma, and within eight weeks it had not only grown but also spread to his spine. After a three operations and six weeks of daily radiotherapy, Alexander was only given a 20% chance of survival. But, thanks to the support of his family, and wonderful donations from people like you, Alexander was able to have a pioneering personalised cancer vaccine made in Germany and he’s responded well.
Now Alexander needs your help again. Rhonda says: “We’re holding an event to keep paying the £3,700 per month for a breakthrough inhibitor medication from the Royal Marsden. It’s in the NHS approval system – but cancer doesn’t wait for admin so we are paying privately for it until the approval comes through next spring.”
The event she has planned sounds fabulous: “The Coney Suite at The Warren in Hayes will be the location for a fantastic night of music, dancing and entertainment. There’ll be magic, fundraising games and a chance to win up to £1,000!”
So join them, have fun and help Alexander beat brain cancer. Tickets are just £10 each. To buy a ticket or make a donation, visit gofundme.com/braincancerbattle
Update: 11 July 2024
Rhonda writes:
I am writing today with some truly wonderful news! Alexander’s medication has been approved by NICE and is now available on the NHS!!!!!!!!!
It is available to all children in the UK with high or low grade brain tumours with the BRAF mutation. I have added some weblinks below if you would like to read more. It is the first new brain tumour treatment for children in DECADES!! It is just amazing!!
Yesterday we collected the first prescription of medication that we didn’t have to pay for!!!!!! It was quite a moment not to have to go into the cashiers office and pay over £11k before it could be released to us. We simply went up to the hospital pharmacy desk and collected it. Little did anyone there know what we have been through to get to that point!!
This means we can finally say…. We no longer need to fundraise!!!!
Coney Hall Village Residents' Association (CHVRA) 