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help us to save our baby boy!
#charliesfight #charliesarmy #parentalrights #raredisease #whatif
Our gorgeous little 11 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene. (This was unknown to us until Charlie was 3 months old)
He was born on the 04/08/16 (4th of August) 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, he now needs a ventilator to breathe but we have never lost hope throughout all this time! After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. 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.
Charlies 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's oral medication so nothing invasive or harmful.
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 - this will obviously cost us a ridiculous amount of money, money we unfortunately don't have enough of.
If we don't raise enough money then we wont be able to go to America for treatment and Charlie will die! Great ormond street hospital have already taken us to court to try and gain permission to turn off our baby's ventilation which will result in Charlie's death :( They don't think it's in his best interests to go but we think it's in his best interests to have a chance to improve.
The court date is April 3rd and it will be held in the high Court in London.
We just CAN'T let our baby die when there is something that might help him! We won't give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else. We understand that rare diseases don't get enough funding for research but why should that be a reason for a child to die?! He's here now and this could help our baby.
If Charlie receives this treatment and it does work like the Dr in America thinks, 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 xxx
#charliesfight #charliesarmy #savealife