Charlie Gard Has Passed Away...

I can't begin to imagine how those poor parents feel. My heart is hurting for them.

Rest in peace, sweet angel. :(
 
honeybunny said:
I still do not understand how or why the hospital was holding him prisoner ? ? ?

:dunno:
Click to expand...
Horribly sad story, but I did read that if the hospital took him off the life support he would die, and they did not have the equipment for him to actually make it home. True or not, I do not know.
 
Kiss your kids a realize how lucky you are... this is so very sad. :(

I believe the hospital thought the parents would try to get to the US with the child for the treatment. Not sure it would have mattered, I don't think the child would have made it to the airport let alone the US.

I think this is where the Hospital/Government are WAY out of line.

They should have released the child.

I read somewhere that he was being kept from seizures by 4 medicines, and could not breath on his own, so I think the whole mess was made worse by not assisting the parents to get him "Home" to their house.

Once at home the couple might have seen the magnitude of the health issues, been able to grieve their loss, and realize they were given this sweet child for just a moment. At home out of the spotlight, they might have had the time they needed to realize his life would never be the one they had imagined and dreamed for him, nor would it be but a whisper of time until he passed.

The government and hospital not allowing them to take the child from that hospital kept the parents fighting THAT battle instead of focusing on what was best for Charlie... (in my opinion.)



Charlie’s condition:

  • Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. He suffers specifically from the RRM2B mutation of MDDS.
  • In Charlie’s case, his brain, muscle and ability to breathe are all severely affected. In addition, he has congenital deafness and a severe epilepsy disorder. His heart, liver and kidneys are also affected but not severely.
  • Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided. No one can be certain whether or not Charlie feels pain.
  • One of the leading experts in the world with a special interest in mitochondrial diseases has concluded that Charlie has infantile onset RRM2B deficiency which is the most severe form.
Possible treatment
  • Charlie’s parents have applied to take him to the United States for nucleoside therapy treatment. The doctor in the United States has not had the opportunity of examining Charlie but, based on the medical information available to him, has acknowledged that he thinks Charlie “is in the terminal stage of his illness”.
  • Great Ormond Street Hospital did apply for ethical permission to attempt nucleoside therapy on Charlie - a treatment that has never been used on patients with this form of MDDS. By the time that decision was made, Charlie’s condition had greatly worsened and the view was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.
  • Nucleoside therapy has been referred to as “pioneering treatment”. In fact, this type of treatment has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS.
 
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