We demand Alder Hey to release Alfie Evans to a hospital of his parents' choice.
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Alfie Evans is at Alder Hey Hospital in the PICU. He was born in May 2016 and has been hospitalised continuously since December 2016, dealing with chronic seizures of an undiagnosed disorder. Having given up on him as early as February 2017, and refusing to do a standard life-enhancing tracheostomy, the hospital has applied to the High Court to remove parental rights and withdraw ventilation to end Alfie’s life.
Alfie was born healthy and on time. We were so happy to have him with us going home, our beautiful boy. He grew and fed well, but was exceptionally sleepy and didn't meet milestones. After a couple of weeks we noticed Alfie wasn't doing things he should be, like lifting his head up, grabbing his dummy, eating his hands, etc. We also noticed he was doing a jerking movement with his hands, arms and legs, and his eyes would roll up. Alfie often had his hands clenched into a fist. We took him to doctors three times, who said he was lazy and a late developer.
Months went by and Alfie went backward instead of forwards. He started making more jerking movements and wasn't himself at all. Finally Alfie became agitated, crying inconsolably. Then Alfie got a chest infection and landed in the hospital. The infection led him to have a myoclonic jerking spasm, and Alfie struggled to breathe. This is when he was first put on life support, the worst nights of our lives. They told us in January 2016 that Alfie wasn't going to make it, so we had him christened. We thought we were going to lose our son and our hearts were desperate.
But Alfie had other ideas, he managed to beat the infection and start breathing on his own again. He was moving and trying to open his eyes. Unfortunately, Alfie caught another infection and went back on the ventilator.
Time and time again, despite not being diagnosed or treated for any suspected underlying disease, his seizures being somewhat controlled by a heavy cocktail of sedating drugs, Alfie has come back over and over from every infection and challenge. The hospital claims that Alfie is “insensate” and unaware of any stimulus or irritation, which is proven wrong in hundreds of videos, against the odds of a heavy cocktail of anti-seizure drugs with sedative effect. Daily, Alfie moves, stretches, yawns, responding to tickling and noise and cuddling.
And yet even with all this, with loving parents (we are only 20 years old) who persevere through great strain and leave no stone unturned for Alfie, with support around the world, Alder Hey wants to turn his life support off. We have found another European hospital willing to help Alfie move forward, get a tracheostomy and PEG tube and get off heavy sedation, and to try to diagnose and treat him. We’ve been told several times by outside doctors that Alfie can even eventually be able to go home with a tracheostomy and direct stomach tube (PEG).
Yet Alder Hey keeps moving the goalposts. They have gone from telling us they would allow transfer if a hospital was found, and putting us through a long process of proving our option was viable, to admitting they would not allow any such transfer. The pressure by the doctors to end Alfie's life has been unrelenting. Now they have resorted to legal force, to remove parental rights and end Alfie's life, going to court behind our backs when we were still willing to go through mediation to find a positive solution. We are relieved that after significant pressure was exerted by our legal team, the hospital backtracked and agreed to the fair mediation they denied us before going to court.
Many people have seen Alfie's determination and strength as he battles through every single thing that is thrown at him. Alfie is a beautiful boy, growing big and solid, who is showing every possible sign that he could to tell us that he wants to get better and that he is still here to fight and live his life with whatever help we can give him. Doctors can’t explain away the signs Alfie gives of fighting on. Disabled and sick children deserve care, not a hastened death. We Alfie’s parents have the right and responsibility to make decisions to save him and move him to a hospital who will honour those decisions. Give Alfie his rightful chance at life!
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