"At 3 months old, Leo wasn't progressing like normal babies and when he was around 9 months he started having seizures," says Glyn Richards.
"It was not long after that that he was diagnosed with TSC. He's been through some really, really rough times – his eye sight is pretty bad, he suffers
from asthma and also has angiomyolipomata through his kidneys.
Though unrelated to TSC, he also has to deal with Craniosynostosis which is a rounding point to his forehead which could have resulted in surgery – although
we decided against this as it felt just too brutal. He also has epilepsy and autism resulting from his TSC, so life has not been easy for Leo at all."
Glyn, 35, an Insolvency Administrator, has been Leo's step-dad since he was two years old, and despite no longer being in a relationship with Leo's mum
he still plays a huge role in Leo's life.
"To Leo, I am Daddy," says Glyn, "which is absolutely brilliant. He started to talk at the age of six and his first word was 'Daddy'. I cannot tell you
how that made me feel. And then by the age of 9 or 10 he started to talk properly – and now we just can't get him to stop!"
Leo, now 15, and doing really well at special school, stays with Glyn every other weekend when the two of them enjoy their mutual passion for theme parks,
watching TV and dachshund dogs.
"Knowing Leo has really changed me," says Glyn, originally from Cardiff but now living Crystal Palace. "I feel lucky to know Leo and that he is in my life.
Being with him has made me a lot more aware of other people and to not be so quick to judge. Sometimes when Leo and I are out together we get that
look from some people as if to say 'What's going on there then?' And that's not good. No-one should judge anyone before they know the full situation."
Glyn has done a number of fundraising activities already including a bake sale at his former workplace, the London to Brighton Cycle Ride, and this year,
the Henley on Thames Tough Mudder.
"It was hard work, but loads more fun than I thought it was going to be," says Glyn. "I did it with friends and work colleagues and it was great being
able to tell other competitors about the TSA as we were helping them over the obstacles."
Glyn says he would encourage anyone to fundraise for the TSA and plans to do at least another Tough Mudder next year.
"The TSA is fantastic," says Glyn. "There's a real sense of us all being in it together. The TSA is doing so much to fund new research, new procedures
and new developments. It is really, really great."