Please help to save Charlie’s life
Fundraising campaign by
Lily Ramos
-
US$10.00Donated So Far
Campaign Story
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
Organizer
- Lily Ramos
- Campaign Owner
No updates for this campaign just yet
Donors & Comments
- Guest
- Donated on Feb 20, 2017