Rare Disease Report

Charlie Gard's Parents Walk Out on Court Hearing

JULY 12, 2017
James Radke
This morning has been an emotional one for the parents of Charlie Gard.
Earlier today, they participated in a scheduled court hearing led by Judge Nicholas Francis to examine new evidence that would support the idea that an experimental procedure would likely help their son, an 11-month-old who is currently on life-support. Emotions ran so high that the parents stormed out of the hearing following an argument with the judge.
The proceedings will continue this afternoon, but so far, the judge has heard written statements from Dr Hirano at the Bambino Gesu Hospital in Rome about the use of an experimental procedure in the United States (nucleoside replacement therapy) that, in his opinion, is appropriate treatment. The letter by Hirano stated that the experimental procedure has a 56% of crossing the blood-brain barrier and lead to potential improvement in Charlie’s condition.
Following that statement from the Vatican-affiliated doctor, the Judge asked the lawyer for the parents who had been treating Charlie for the past 12 months.
The answer, as is almost common knowledge, is that doctors at England’s Great Ormond Street Hospital have been treating Charlie, and it is their opinion that the most humane option would be to turn off life support for the baby, who cannot move or breathe without assistance.
Charlie has mitochondrial DNA depletions syndrome. There are currently no approved treatments for this condition and in most cases, the children progress in a similar manner that Charlie did (being born healthy before quickly deteriorating as muscle strength declines).
Earlier this year, his parents set up a GoFundMe site to send Charlie to the United States to receive an experimental procedure. That conflicted with the hospital’s responsibility to not allow one of their patients to undergo treatment that would likely only increase suffering without providing any benefit (aka, first do no harm). 
Following months of court battles between the hospital’s request to remove the boy from life support and the parents desire to send him to America for an unapproved, and unproven procedure, the 2 parties are back in court for 1 final decision.
The case has captured the attention of many in the rare disease community, as well as world leaders, like Pope Francis and President Donald Trump.
By the end of the heated questioning between the Judge and the parents’ lawyer about the validity of some of the data available to the court, the parents stormed out of the court room with Charlie’s mother, Connie Yates shouting “I didn't say that!” in regards to the Judge citing a quote from an earlier hearing.
According to news sources, the parents are now back in the court room for the afternoon session and the Judge has apologized to the parents. A video conference with a doctor from the United States is expected to be part of the afternoon’s session.

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