Note: Update to story added below
Before I say anything, I’m going to give Thomas Evans a chance to speak. This is about a minute long, listen to the man:
“My son is two years of age and he’s been sentenced to the death penalty” - Tom Evans speaks passionately about a ruling to withdraw life support for his 21-month-old son Alfie Evans. pic.twitter.com/Z5ZTN87kPS— Josh Parry (@JoshParryECHO) February 20, 2018
These are the words of a man who had to represent himself in court to defend his two year old son from a hospital who has decided that he should die. Let’s be very clear about the circumstances here. Alfie has no diagnosis, Alder Hey says they can’t figure out what’s wrong with him. Other hospitals have offered to take Alfie’s case, private funds have been raised to transfer him, he’s been deemed fit to fly, and this judge sat there and said that this little boy’s life should be ended by this Friday.
I’m not speechless, but there’s a lot I’d like to say that isn’t appropriate for this venue. I’m here to tell you what’s happened, not what I feel about it. But I will say that a little boy who’s fought for life, who in recent weeks has been shown online smiling at his daddy, has had first a hospital and now a judge give up on his life, but his family and their tens of thousands of supporters all over the globe have absolutely not given up hope.
Alfie’s Army remain defiant in the face of this incredibly upsetting decision. “We are devastated but will never give up on Alfie - where there is life there’s hope”. pic.twitter.com/QhIm2TosSl— Connor Dunn (@ConnorDunn7) February 20, 2018
My heart is broken for this family. My heart is broken for a system that puts this family in this position, and most of all my heart is broken for little Alfie. At Royal Blue Mersey we’ve followed Alfie’s story since last summer, and honestly the case caught our attention because Alfie’s parents are Everton supporters, but this is far beyond football at the moment, obviously. No parent should ever have to bury their child, especially not when there are hospitals willing to give everything they have to help him, and he won’t die unless the people overseeing his medical treatment pull the plug.
Pray for this family, pray that the hospital and the courts will change their mind and pray that someone can diagnose Alfie so that he can grow up to be the little boy we know he has the potential to be.
Supporters of Alfie’s army walking from bootle to Alder Hey in support of Alfie Evans. pic.twitter.com/f2TpibsNYx— Louise Abbott (@elabbotts) February 18, 2018
Included below is the most significant section of the judge’s reasoning for letting Alfie die. The quote provided comes via the Liverpool Echo:
One professor expressed the opinion that there were many ‘distinguished’ experts which have assessed Alfie’s health. He added that it is ‘inevitably fatal’ and that there is ‘no possibility’ of diagnosing a named disease and that ultimately it may end up being named after Alfie.
He added that Alfie’s parents do not understand or accept that the majority of Alfie’s reactions to stimuli - IE pain or noise, is very likely ‘not a purposeful’ reaction but ‘very likely caused by seizures as proved by repeated ECG monitoring.’
He said that these reactions are very difficult to separate from other reactions - especially by parents - however added that his condition could fluctuate.
He said that the disease had progressed so far that recovery is ‘extremely unlikely’ and that Alfie’s inability to breathe is a consequence of the disease and that there are ‘no treatment options available’ that could stop the disease.
He said that “I do fully support the assessment of the neuro paediatric team that the seizure activity is caused by the progressive neurodegenerative disorder and not by the medication.
It is well known that seizures in these circumstances are very difficult or impossible to control. My colleagues have tried several anti epileptic medicines and as the seizures are not under control yet and that other treatments or different cocktails of epileptic drugs may be trialled, but it may be difficult for the parents to understand, but in my opinion there is little, if anything to offer.
As to the possibility of further testing the professor could not be clearer.
Based on the extensive testing read in court, I do agree with the medical teams involved that there are no useful tests that may be performed to improve Alfie’s condition.
The genetic testing is performed by blood sample without any risk for Alfie and these tests may in certain cases be beneficial to identify a new disease, but they have never been able to cure a patient with a similar disease pattern as Alfie shows.
It is clear that the parents of Alfie Evans are not going to accept this reasoning from the judge. They are raising funds to launch an appeals process, which Everton Chairman Bill Kenwright personally assisted. It’s clear that this story is not over.
UPDATE.. Thank you so much Bill Kenwright for your help, Thank you also to everyone who has donated to help raise the £10,000 ..Amount has now been raised..we are so grateful to each and everyone of you, words just don't seem enough right now but ..Thank you all @Everton pic.twitter.com/6jhtsn9J9h— #ALFIESARMY (@Alfiesarmy16) February 21, 2018
This account does not purport to be a neutral or unbiased narrative of the events that have taken place surrounding the Alfie Evans case. The perspective presented is that of the writer and does not necessarily reflect the views of the club, site or parent company.