LONDON (ChurchMilitant.com) - The parents of a sick British baby who died last year are expressing support for a sick U.K. infant following his failed legal battle and the refusal of the hospital to discharge him.
Charlie Gard's parents, Chris Gard and Connie Yates, released a statement Friday on Alfie Evans, saying, "With heavy hearts, we have watched as Alfie's case has unfolded. For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate [Alfie's parents] are going through."
Alfie is the 23-month-old with a rare degenerative neurological condition whose has survived more than three days, as of press time, without his breathing and feeding tubes.
Since Charlie's passing in July last year, we have been working with pediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.
The parents are calling this law "Charlie's Law" while setting up the Charlie Gard Foundation with the almost $1.8 million dollars raised for their son's treatment abroad. It is slated for launch on June 1. The website's description says the foundation's goal is "to become one of the U.K.'s leading charities dedicated to fighting mitochondrial disease," which Charlie was diagnosed with at eight weeks old.
"The foundation raises awareness for the condition, invests in world-class research into viable treatments and supports families whose lives have been touched by this incurable disease," reads the description.
Steven Woolfe, a member of the European Parliament, announced Thursday he is launching the "Alfie's Law" campaign outside the House of Parliament to overturn the law "to bring an end to the tragic situation of parents of young children such as Alfie Evans."
He claimed that parents have "moral rights" to care for their family members while acknowledging the role of doctors and nurses in treating sick children.
Pushing for parents' rights in high profile cases, he continued:
The cases of Charlie Gard, Aysha King and now Alfie Evans, show a dangerous trend of public bodies depriving parents and families of the right to make decisions they believe are in the best interests of their children. Parents' rights should neither be ignored nor dismissed as irrelevant by hospitals and courts, who believe they know best and have the power, money and resources to overwhelm families who simply want to save their child. We demand a change in the law to restore the rights of parents in such decisions.
Gard and Yates recognized that "once cases are public it is difficult for people to be fully aware of the complexities and this often leads to ill-informed judgments on both sides and creates unnecessary conflicts."
But they insisted that "hospitals, healthcare professionals, families with sick children, the NHS and the reputation of our own government" are "better for everybody" when "addressing problems" and "creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts."
Alfie was born healthy in May 2016 but after missing a number of developmental milestones, his parents knew something was wrong. In December of that year, the sick toddler suffered a chest infection and was hospitalized for seizures. He has remained at Alder Hey hospital in Liverpool, England ever since.