Follow our story here: https://m.facebook.com/Charliegardsfight/
Our gorgeous little baby boy Charlie was born on the 4th of August 2016 (the best day of our lives). We had the happiest 8 weeks at home until he lost weight and we took him to our local hospital. Nobody knew what was wrong at that point but things went downhill from there.
After an anxious wait for the results we were told that our baby had mitochondrial depletion syndrome (we had never heard of it either) which is a progressive fatal disease which unfortunately has no cure.
Despite Charlie having one of the worst results that the doctors have ever seen Charlie is, against all the odds, fighting to stay alive when he, on paper, and in the eyes of the doctors 'should have died weeks ago' so we are starting a petition to keep him alive.
His trunkle muscle's are too weak for him to breathe by himself for longer than a few hours so to keep him here with us he would have to have a tracheostomy. The drs here are so far in disagreement with this as they think he 'wouldn't have a good quality of life' but Charlie in our eye's deserves to have a life and we will give him the best life possible. Why should he die just because he needs assistance with breathing!?
Our baby still looks at us, he loves having baths (coz he can kick about), he loves sucking his dummy etc but most importantly he's not in any pain!! Please help us in fighting for his life.
We don't know how long he will have here with us but let that decision be his or ours.. not the doctors'. We have a meeting next week to discuss this and we would like to show them how much support we have around us and how many of you think that Charlie deserves a chance. We're not expecting him to live long but we want to spend as much quality time together as a family as we can for as long as he's not suffering. Children defy the odds all the time and we think that our little superhero will too... given the chance!
Thank you from Charlie's Mummy and Daddy xxx
Further info: On the 11th of October he went into respiratory failure so was taken to theatre to be ventilated and then we were rushed to great ormond street intensive care where we have remained ever since. He had numerous test's (2 MRI'S, ECG, echo heart scan, an ultrasound on his brain and abdomen, 2 lumber puncture's, muscle and nerve conduction test, numerous blood tests, genetic testing and a muscle & skin biopsy).
