Just 7 days short of his first birthday, Charlie Gard has passed away after being removed from life support while in a hospice center in London, England.
Charlie captured world wide attention in the past month as his parents, Chris Gard and Connie yates, went to court to obtain control of their son’s treatment options while the hospital where he was being managed, Great Ormond Street Hospital for Children, had been given the legal rights to take the child off life support to relieve him of any further discomfort with no means to improve or delay the deterioration of his symptoms.
Charlie had mitochondrial DNA depletions syndrome, in which there is a reduction of mitochondrial DNA copies. There are currently no approved treatments for these type of rare conditions and in most cases, the children progress in a similar manner that Charlie did (being born healthy then quickly deteriorating as muscle strength declines).
Last week, Michio Hirano, M.D. of the Department of Neurology at Columbia University spent 2 days examining Charlie Gard with doctors at Great Ormond Street Hospital. Dr Hirano was Charlie’s parents’ last hope to provide their son with an experimental treatment option – nucleoside therapy — but Dr. Hirano concluded from his visit that Charlie disease was too advanced for the treatment to be a success.
On Monday, the parents withdrew their legal challenge before the High Court in London. Then on Thurday, the Judge ordered Charlie be transferred to a hospice center and life support be removed.
Today, soon after the life support was removed, Charlie passed away.
Sadly, even in the last 24 hours of his life, the parents remained distraught over the legal decisions made. They had hope that the judge would have allowed them to take Charlie home to live out his last days quietly with family. However, the judge ordered the child be transferred to a hospice from the hospital.
We at Rare Disease Report want to express our heart felt condolences to Charlie's family during this sad time.