Story
Maddie is my beautiful 4 year old neighbour. She has the most gorgeous smile and such an infectious laugh, however, Maddie has been robbed of so many things. When Maddie was born she was perfectly healthy and reached all of her early milestones, however, at 18 months Maddie started to regress, she slowly lost the ability to use her hands and could know longer speak the few words that she had learned to say, after a few months Maddie was completely trapped inside her body, even unable to give eye contact.
At 2 years old Maddie was given the diagnoses of Rett syndrome, a debilitating disorder that only affects girls. Rett means that Maddie can’t talk, walk or even use her hands. One of the worst things about Rett is that the older Maddie gets the worse her disability will become. By the time Maddie gets to 5 she will likely suffer from seizures daily. By the time Maddie's 10 she’ll probably be unable to sit up unaided. And as Maddie gets in her teens, she’ll struggle to do simple things like eat and breathe.
But there's something remarkable about Rett- scientists have reversed Rett syndrome in mice!
Unlike many other disabilities Rett syndrome is cause by one gene called MECP2. This makes a protein which is necessary for normal brain function, but Maddie’s MECP2 gene doesn’t work properly. However in 2007, Professor Bird, at the University of Edinburgh, showed that by replacing the missing protein, even in adult mice, reverses the symptoms of this devastating disorder.
Can you believe it? Maddie could be cured of Rett syndrome!
However, this will only be possible if we keep raising money which will go towards research.
It'll be amazing if you can give a donation.
All the money donated here is going to Rett Syndrome Research Trust UK, it's sole purpose is to accelerate funds going towards finding a cure for the girls and women living with Rett syndrome today. 98% of all money donated goes towards the world wide research projects, trying to find a cure for Maddie and the thousands of other girls with Rett.
Imagine the symptoms of autism, celebal palsy, Parkinson's, epilepsy and anxiety disorders all in one little girl... This is Rett syndrome.
Now imagine them disappearing one by one.
Rett syndrome has the potential to be the world's first curable brain disorder!