Our gorgeous little 6 month old boy Charlie has a devastating disease called mitochondrial depletion syndrome. The Dr's want to end his life and they are in the process of applying to the court to take away our parental rights and switch off his ventilator.
Hewas 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 but we have never lost hope throughout all this time! After endlessly researching we found a medication that may help him and a Dr in America that recommended a treatment plan. 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. The hospital we are in were interested in doing a research trial but they changed their minds which has been utterly devastating to us, especially given the fact that we finally had some genuine hope that something could be done to save Charlie, then we had it taken away in the blink of an eye.\
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
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