Mother raises thousands of pounds for son with ultra-rare condition

A UK mother has managed to raise £8,000 for her young son, who suffers from ultra-rare MECP2 Duplication Syndrome.

Four-year-old Blake McMillan has a short life expectancy and is at the developmental level of a two-month-old baby, but mother Jenny has her sights set on raising money to fund a potential cure for his condition – after scientists discovered a treatment that successfully reverses the condition in animals.

Charity Reverse Rett is currently funding research into adapting the treatment to suit humans, and Ms McMillan is on a fundraising mission to support young Blake on his path to a potential cure.

A ladies’ lunch at the McMillan family’s local Apex Hotel in Tayside, Scotland, has successfully raised £8,000, and Ms McMillan hopes to “make it a yearly event” – and carry out further fundraising in aid of Reverse Rett.

“I’m very passionate about this and I will do everything I can to help make the cure possible,” she said.

“Every day I look at Blake and I tell him that mummy is fighting for him.

“When people hear ‘genetic condition’ they assume it’s permanent, but science is moving on and this cure would completely reverse the condition.

“It has already been found to work on animals, so they are very hopeful that it will be effective on people too.

“Blake 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,” she added.

EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions. For more information about the services we provide, please contact us today.

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