A passionate dad has promised never to stop fundraising until a cure is found for his seven-year-old son’s incredibly rare chromosome disorder.
Richard Page – whose son Ellis has MECP2 duplication syndrome, a chromosomal abnormality causing epilepsy, increased risk of chest infections and profound learning and physical disabilities – raised £119,000 last year for research into the syndrome.
Freelance graphic designer Richard, of Barkby, Leicester, said he’ll never give up until the symptoms of the syndrome are reversed – or at the very least reduced.
“I’m never going to stop, not at least until we’ve got a cure,” the 30-year-old said.
“Maybe not so much a cure, but finding a way to lessen the effect of the chest infections and the epilepsy, as they’re dangerous for Ellis.”
Richard has become a well-known figure in Leicester over the past two years after cycling to every Leicester City away game in the 2013/14 season for the Text Ellis campaign, and in April completed an anniversary ride to Burnley, raising a further £4,500.
He already has plans for a second anniversary ride next April – this time to Manchester United.
The Leicester father – who also has a two-year-old son called Theo – believes that staying in a good frame of mind is crucial for the future.
“I think being positive is one of the reasons I did the campaign,” Richard said.
“I needed to accept he’s got a condition, but if there’s a chance we can make things better then it gives you that motivation and something to concentrate your mind on.”
“You also think of the other children and other families that are going through it, and the families you don’t want to have to go through it 10 or 20 years down the line.”
He added: “You want it to be a case of saying your child has got this syndrome, but don’t worry because we’ve got all this treatment and we can reduce the effects.”
Despite Ellis’s condition, Richard and his wife Leanne continue to believe that everything happens for a reason.
“We always think that if we’ve had Ellis then it’s happened for a reason,” said 29-year-old Leanne.
“Maybe we were supposed to do something to help them find a way to cure it. The condition is really rare anyway but usually they find that the mother is a carrier.
“I’m not even a carrier, so for us to have Ellis is so unlikely. That’s why we feel that we’ve had him for a reason and we want to make the most of it,” the former nursery nurse added.
In total, the Text Ellis campaign raised £119,567 for research into the syndrome, and Richard’s brother Chris – who completed a dozen of the rides with Richard – said the staggering scale of the achievement shows the kind of father he is.
“What he’s doing for his son…not many people would’ve been able to do that,” the regional manager said.
“It’s been difficult for Richard and Leanne from day one with Ellis, but I think they’ve handled it really well. Obviously they have days when they’re down in the dumps about it, but that’s to be expected.
“Richard is a fantastic dad, Leanne is a fantastic mum and I’m just proud of both of them,” the 34-year-old added.
Do you know of any charity endeavours as remarkable as this? Tell us in the comments below.