Mum’s multi million pound dream of hope

Wee Blake McMillan has one of the rarest medical conditions in the world.

Half of those diagnosed with MeCP2 duplication syndrome die before the age of 25 and there’s no known cure.

The genetic disease, which was only discovered in 2005, will cause Blake, 14 months old, to eventually have violent seizures that will stop his brain functioning properly.

Clinical trials in America provide Blake’s family with the only hope of treatment but millions are needed to fund research projects.

His mum Jenny, of Longforgan, Perthshire said: “I couldn’t go to my grave not knowing I’d done everything possible for Blake to have a normal and healthy life.

“To begin with I felt I was playing a waiting game, looking at him and wondering when he was going to get poorly.

“Now the fundraising efforts give me something to get up for every day. We know we have high targets to meet, but it means there is always something that can be done.”

Only 120 cases in 36 families of MeCP2 have been reported worldwide since the genetic condition was discovered.

Sufferers are almost exclusively male and most require round the clock care.

Jenny, 36, added: “It’s not like I can say if we get £2 million we will get a cure. Ultimately we need a whole lot of money.

“More and more research projects that need funding will come along.

“I have to admit that it will be a long road, the trials at the moment are not being done in humans.

“But we have to start somewhere and this is it.”

Kayleigh MacKenzie, whose fiance Jim McAlister plays for Dundee, was inspired to help raise money for the research fund after meeting Jenny and her husband Paul at Dens Park.

Next Sunday the 25-year-old Operations Manager is taking on Bupa Great Women’s 10K in Glasgow.

She revealed: “Blake was the mascot for the day at a game earlier this season.

“I was surprised to see someone so young out on the pitch, so made the effort to speak to them after the match.

“Amazingly before I did, they picked Jim as man of the match.

“It’s a terrible and rare condition. I want to do what I can to help as every little will make a difference.

“They’re a lovely family and I knew right away I wanted to do what I could.

“I’m training hard and think about Blake to keep me motivated. I’ve done a few before, but I really want to run well this time. I certainly plan to do more fundraisers.

“He’s a brave lad and he really captured my attention. I just want to do my bit to help out.”

The McMillan family have been given a massive boost from the support they’ve received from strangers.

Jenny added: “This sort of generosity is what brings strength to the family.

“Before we started the fundraising we looked at the future which, to be honest, was grim.

“Every time I looked at Blake all I could focus on was the difficulties that lay ahead, what he would become.

“But now I have a different focus. We don’t know if the money will ever change his life but hopefully at some point it will help somebody.

“The chance to make a difference has brought the family together. It’s wonderful, we’ve been inundated with offers of support.”

You can donate at: justgiving.com/Kayleigh-Mackenzie