“Our gorgeous little 7 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene.
He was born perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker…
After endlessly researching and speaking to doctors all over the world we found hope in a medication that may help him and a doctor in America has accepted him in his hospital.
Charlie’s condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentially repair Charlie’s mtDNA and help it synthase again by giving him the naturally occurring compounds that his body isn’t able to produce.
It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer. We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.
We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America – if we don’t raise enough money then we won’t be able to go to America for treatment and Charlie will die.
If Charlie receives this treatment and it does work it won’t be just Charlie’s life that has been saved, it will be many more children in the future who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.
We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie.”
#charliesfight #charliesarmy #savealife
To donate now please visit www.charliesfight.org