Joey’s Journey is a Special Named Fund at CCLG raising funds for research into high grade gliomas. Joey was 10 days old when in December 2020 he was diagnosed with congenital glioblastoma, a brain tumour.
His mum Sam shares his story…
We think that Joey was born with a brain tumour, but we don’t know for sure. He was diagnosed with congenital glioblastoma at just 10 days old on December 13, 2020. He’d been admitted to Edinburgh’s Royal Hospital for Sick Children for jaundice, which turned out to be a red herring. He was sleepy but doing okay, and we went in thinking there was an infection in his finger nail. But he’d developed a twitch in one of his feet, and this was what worried the doctors. Just to rule anything out, they did an ultrasound on his head and that’s when they found the tumour.
Joey had to go for emergency surgery, a couple of hours after finding the tumour, as it was so big that he wasn’t going to survive if they didn’t operate to remove it. He had a second operation on December 23, and both went well. He then began a chemotherapy course on January 11, which finishes in July 2021. His treatment will be reviewed after that, depending on how he has responded. It seems to be going well and although he has his moments of being up and down with treatment, he is full of smiles once he feels better.
Joey’s diagnosis and treatment has been made even more difficult with COVID, with only one parent allowed on the ward. At times, his dad Steven and I have been like passing ships. We’ve got a young daughter, Carly, and it’s been hard for her, too. We were allowed to take her in Christmas Day, and I think that helped her, seeing where we’ve been going.
We want to do something to give back to some of the charities and organisations that have helped us and Joey in his journey so far. Having played a key role in developing Joey’s own treatment, CCLG is one of them. So, we’ve set up Joey’s Journey to help them continue making progress to help children like Joey, now and in the future.
There are already lots of plans in place for fundraising. Joey’s grandparents, Graeme and Jean, along with some family friends, are all walking 500 miles each to raise money. Beyond that, we want to hold some events, when allowed, where everybody can get together. Some of my former colleagues have already said they want to do a challenge for us, too. We’ve received a lot of support so far, and it’s wonderful that so many people are already wanting to help make a difference.
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Fundraising pages
Text CCLGJOEY to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Joey's Journey so that your donation is allocated to the correct fund.