A Tayside mum racing against time to raise money for her toddler son born with a rare genetic disorder has been given new hope after scientists found a way to reverse the condition in animals.
Four-year-old Blake McMillan has MECP2 Duplication Syndrome, which means he is at the developmental level of a two-month-old baby and suffers from a number of health issues, which may ultimately shorten his life.
But there is a ray of hope for the tot, after scientists discovered a cure that reverses the condition in animals — and are working to adapt it to humans.
Blake’s mum, Jenny McMillan, said that although Blake may not hold out until the cure becomes available, she is still determined to help other children with the condition.
Over the weekend, a ladies’ lunch at the Apex Hotel raised nearly £8,000 towards the research as well as for equipment and home adjustments to make Blake’s life easier.
Jenny said: “Just under 200 people attended the fundraiser.
“Some of the money will go towards the Reverse Rett charity, which is funding research into Blake’s condition.
“The cure is not just pie in the sky now — I have visited the scientists working on it and they are utterly determined to make it happen.
“It has already been found to work on animals, so they are very hopeful that it will be effective on people too.
“When people hear ‘genetic condition’ they assume it’s permanent, but science is moving on and this cure would completely reverse the condition.
“Of course it wouldn’t happen overnight — the patient would have to learn how to walk, talk and do everything from scratch, but it will be possible for them to eventually do everything that a healthy person can.
“Every day I look at Blake and I tell him that mummy is fighting for him.
“He is very badly affected by the condition and I accept that we might lose him before the cure is developed, but even if that happens I’ll continue to fundraise.
“I’m very passionate about this and I will do everything I can to help make the cure possible.”
The fundraiser was so successful organiser Linda Cooper said they are now considering making it an annual event.
“It was fantastic,” she said.
“We raised nearly £8,000 and we are hoping to make it a yearly event.”
Despite being limited in what he can do, Blake is growing up to be an affectionate toddler who likes cuddles and being around other children.
He attends nursery where he enjoys being the centre of attention and he is awake a lot more since some of his medicine was changed.
Jenny added: “Before, he was sleeping for around 20 hours a day and he wasn’t showing an interest in anything when he was awake.
“We altered some of his epilepsy medicine and he’s a lot more alert now.
“He is up and down a lot – he was very ill just after Christmas and he’s had pneumonia in June and July, which was very serious.
“But he also has good days when he enjoys being stroked and cuddled, and watching the TV.
“The way I think of it is, I expect the worst but hope for the best and I take each day as it comes.”
The family moved from Longforgan to Carnoustie three years ago.
