LEICESTER, United Kingdom – Charlie Gard’s parents say they have been watching the Alfie Evans case “with heavy hearts,” and have pledged to try and change British law to “prevent parents experiencing painful and prolonged conflicts with medical professionals.”
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which caused brain damage and left him unable to breathe unaided.
The 11-month-old died last July, after his parents – Chris Gard and Connie Yates — fought a long legal battle with London’s Great Ormond Street Hospital in a failed effort to transfer him to the Vatican-owned Bambino Gesù children’s hospital in Rome.
The London hospital argued a move was not in Charlie’s “best interest” and the treatment proposed by the Rome hospital would’t help and could cause him harm.
Alfie’s case is similar: The 23-month-old suffers from an undetermined brain disease, and the Bambino Gesù offered to care for him.
In this case, it was Liverpool’s Alder Hey Hospital that objected to a move saying it was not in the child’s “best interest,” and – like Charlie Gard – Alfie was prevented by the courts from being taken abroad.
Having exhausted their legal appeals, Alfie’s parents – Thomas Evans and Kate James – on Thursday announced they would work with the Alder Hey Hospital in order to come up with a treatment plan which might allow them to take Alfie home.
“For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate are going through,” Connie Yates posted on Friday to Facebook.
“When we were fighting for our son, Charlie Gard, to be given a chance to try a treatment that could have improved his quality of life, we realized that cases like these would keep happening until the law was changed. Tragically, this has proven to be true,” she said.
The statement said that Gard and Yates have been working with pediatric consultants, medical ethicists, senior lawyers, British politicians, and other parents who have suffered through similar situations to try and propose a new law to prevent conflicts between parents and medical professionals. The law would be called “Charlie’s Law.”
“This involves addressing problems around the ‘best interests’ test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts,” Yates said.
“Once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgements on both sides and creates unnecessary conflicts,” she continued.
Yates said what they are working on is “something that is better for everybody – hospitals, healthcare professionals, families with sick children, the NHS [Britain’s National Health Service], and the reputation of our own government.”
“We would ask those pushing for law change to take account of the careful work already done and join us as we continue to push for a solution that is best for all involved,” she said.
The family has set up The Charlie Gard Foundation, and the website will officially launch on June 1.