Frankie’s fundraising mission after doctors remove brain tumour
LITTLE Frankie Edwards’ family knew something was wrong with him in 2015, when he appeared to be more tired than usual one day.
“He was always a perfectly healthy little boy”, his mum Carys noted.
“I put him into bed one day, but then the next morning I was woken up by my daughter who came running into my bedroom saying something was wrong with Frankie.
“She’d heard a gurgling noise coming from his room – he was only about two and a half at the time, and none of it had been picked up by his monitor.
“When I went in, he just looked lifeless and was in a full seizure. I just picked him up and just ran downstairs with him and rang 999 straight away, but I was so panicked I couldn’t remember the password. My daughter then ran across to get a neighbour, and an ambulance came straight away.
“They managed to stop the seizure with three different medications at the Royal Glamorgan, and the staff said we’d have to wait and see what he was like when he woke up because they really didn’t know what was going on.
“They had done a CT scan and said there was something on there and that it could be a stroke or a tumour, and at that point I collapsed and my friend had to catch me because I thought, ‘This is scary now’. This was the most harrowing time for us as a family.”
Although Frankie’s tumour was benign, the family were told that it would continue to grow and pose a risk to his health if nothing was done.
They were told it could have impacted his speech and developed into something more serious if it was left there, according to medical professionals.
Carys said: “One hospital in Wales refused to do the operation at first, but Great Ormond Street said yes straight away and would take it straight out. There was a risk that they wouldn’t be able to remove all of the tumour, which meant that it could grow back, and it’s such a big operation.
“The tumour was quite close to the speaking part of the brain, so he struggles with comprehension anyway, and they said he’s really chatty and that it could mean he wouldn’t be as chatty.
“They said they that he might not be able to drive if we do it and cause problems, but I said if you don’t do it it’s just going to grow bigger and cause more problems, so it has to come out anyway. So there was no doubt in our mind to take it out.
“The surgery itself took 10 hours as well, at first it was supposed to be two hours, then six, so it was scary as you can imagine, but they did manage to remove it all, which was amazing.”
Frankie had his operation last October and it had been a long time coming for the family, but his recovery was not without its struggles, and resulted in high levels of pain which radiated into his jaw.
After his operation, Frankie also suffered with extreme sensory difficulties.
He had never had issues with sound before, so it was thought that his sensitivity to noise was heightened by the surgery, meaning the family lived in “darkness with minimal sound”, according to Carys.
Frankie also struggled to eat due to intense nerve pain.
His mother said: “It’s such a big relief that the operation has been done now, and he will have to still have checks but so far everything has gone well. I used to kiss his head and just wish I could take it all away, and it’s been so stressful – it is hard. “The pain after the operation was so bad he used to say he wanted to die, which was awful to hear as a parent.” Considering the pain he felt at the time, Frankie also told our sister website WalesOnline: “It was agony. The pain was agony and I couldn’t eat or do anything” when asked if he could describe it. Carys added: “It will have been the worst type of pain you could imagine. It will have been worse than childbirth – I’ve told him he will never feel that kind again. “He is amazing, and so chatty – everyone just says he is the life and soul of the party. Frankie loves Michael Jackson and is obsessed with London and Big Ben! We spend lots of time sightseeing. He loves Arsenal and Cardiff City as well.”
Frankie is also affected by autism, meaning he has a higher level of sensory needs that have to be catered for – but now he wants to give back, and is focusing his energy on raising money for Great Ormond Street Hospital. Frankie and his Rhondda Polar Bear disabled swimming club team mates will be swimming the distance from their base in Rhondda to Great Ormond Street, which is equivalent to 169 miles altogether.
Despite the fact he is now making a strong recovery, Frankie found the process hard to understand and this is another reason he wants to raise money for other children like him in Great Ormond Street Hospital, because lots of their enrichment activities and special equipment are funded by donations.
With the mission now to help Frankie fundraise for sensory equipment for Koala Ward in Great Ormond Street, London, via his fundraising page, Frankie will then present the equipment to the ward in April when he has his next MRI scan.
There was a risk that they wouldn’t be able to remove all of the tumour, which meant that it could grow back
Frankie’s mum Carys