A COUPLE are hoping to help raise £1.2million in a bid to find a cure for a rare disease that could slowly rob them of their beloved son.
Blake McMillan was diagnosed with MeCP2 duplication syndrome three weeks after his birth on March 21 last year.
The illness means that even though he will learn to walk and talk, he’s likely to then lose the ability to do both as he grows older.
Blake, who loves nothing more than laughing with his three-year-old sister Faye as she pulls faces, may even forget how to smile.
Just 120 cases in 36 families have been reported worldwide since the genetic condition, which almost exclusively affects boys, was discovered in 2005.
Sufferers usually start having seizures from the age of five, which cause the brain to stop functioning properly.
Most require round-the-clock care and half will die before the age of 25.
Blake’s mum Jenny, 36, of Longforgan, Perthshire, said: “We’ve been told Blake is likely to gradually regress once the seizures start.
“It won’t all happen straight away, but he’s likely to lose most of his skills until he is like a small baby again.
“Thinking of what Blake is going to go through fills me with panic. The seizures could be so violent they give him a heart attack.
“Most of all, I’m scared of being robbed of my son.”
Jenny and her 32-year-old husband Paul’s only hope of a cure lies with experts in the US who believe they can find a treatment if they can fund groundbreaking clinical trials.
The couple have joined forces with other affected families across the world to raise the £1.2million required.
Jenny said: “It is a lot of money but I couldn’t go to my grave knowing that I didn’t do absolutely everything in my power to help Blake.”
- To donate to the family’s appeal, visit www.justgiving.com/hope-for-blake