There is this little boy in the U.K. Who has a rare, 1 of 16 in the world, Mitochondrial Disease
…just like Daphne
Can I please just write, what freaking Mitochondrial Disease is not rare?! I mean my god, I have never heard of it, nor have any of our family or friends and the chances are just hugely out of this world of getting two mutated genes or even one in Charlie’s case, so yeah they are all freaking rare. Let’s stop saying it now. Before I felt pride saying it, now seeing it thrown in our face justifying inadequacy for treatment and science, it now pisses me off.
I digress sometimes, sorry.
They say he has had brain damage
…just like Daphne
They say there is no cure, no treatment and just enjoy your time
…just like Daphne
His brain damage may be irreversible
…just like Daphne
I have known about this family since last fall, UMDF made a post to pray for a few people. This little guy was one along with another baby that has since passed. I have donated to their cause, shared the news and thought about them daily.
Only recently has Charlie grown to International awareness and where I am pleased with the publicity for the disease, it makes me sick for this sweet baby and his family.
A family with their first child is supposed to enjoy all the firsts in their child’s 1st year. Sleepless nights, giggles, explosive diapers, first solids, those wobbly legs when they take their first steps and the sweet sound of their first words.
Instead these parents get to stare at their sweet boy in a hospital room since 8 weeks of age, missing all the firsts, except a rooftop picnic that hospital staff gave them, and having sleepless nights over fighting the most horrific battle to do nothing other than keep this sweet baby alive.
I can’t even believe a situation of this magnitude, rests in the hands of government officials. It’s disgusting and undeserving. Government officials are not medical experts and they are not Charlie’s parents, who are the only ones that should be able to decide the course of treatment.
In this case the local doctors and hospital think that Charlie should die and not give him a potentially life saving therapy or even the Mito Cocktail. Unbelievable.
At this stage it is not about what will work but ego. Every now and then we have to take a slice of humble pie and eat it, I sure hope that is how this ends.
There are rumors he is suffering, his suction and intubation are painful, come FREAKING on Great Ormond Street Hospital, I see patients getting suctioned in the doctors waiting rooms waiting for an Ear appointment, this clearly was a regular occurrence for this particular family and I don’t think they are in pain. If you tried to put in or remove the intubation tube without sedative I bet it would be painful, like catheter painful (but docs do that even to little babies without sedation) but having a tube in that does not move, and so many others have been conscious and have been fine and not in pain and even talking. Try something else.
Unfortunately with these kiddos they build up a pain tolerance, even to a simple blood draw. It’s sad to see as a parent but a reality for the life they live, constantly being tested and having procedures.
It seems the highest of high people, Trump and the Pope, to name a couple all want to help Charlie and bring him to their countries, but yet the U.K. will not release him. It doesn’t make sense except for ego. We all know that the legal system and this hospitals credibility would be disregarded for all future endeavors.
What I am sad to see is something as simple as two parents caring so deeply and wanting nothing but the best for their child, come to this. I don’t want to see this become the norm but do not blame the parents at all, they had no other option but to bring attention to it in a last ditch effort to save their baby.
These are some of the headlines today, it is unclear of the judges intent for the next few days but he may be asking for the U.S. doccto come examine him. I pray that god is with all involved in this case. This baby deserves nothing but a CHANCE!
I still have hope and faith that this sweet baby is going to prevail.
There is a bill special for this family that you can call your local officials to vote on. I can walk you through the steps of what to do and how so just let me know.
Please keep up the thoughts and prayers until Charlie is in the U. S.
xoxo desiree
Life is RADD 