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Baby Alfie Evans dies, 5 days after doctors took him off life support, amidst titanic legal battles

Parents Tom Evans and Kate James broke the news to their Alfie's Army supporters on Facebook this morning saying: "Our baby boy grew his wings tonight at 2:30 am."
UPDATED JAN 24, 2020
Alfie Evans (Source:Getty Images)
Alfie Evans (Source:Getty Images)

Little Alfie Evans died today, five days after doctors turned off his ventilator.

Parents Tom Evans and Kate James broke the news to their Alfie's Army supporters on Facebook this morning saying: "Our baby boy grew his wings tonight at 2:30 am. We are heart broken."

Alfie died after receiving treatment at Liverpool's Alder Hey children's hospital where he had been in intensive care for more than a year suffering from a mystery brain condition, The Sun reported

The battling tot had surprised medics by breathing unaided with just oxygen, milk and water since life-support was withdrawn at 9.17pm on Monday.

His parents had asked well-wishers to pray as they kept a bedside vigil and posted pictures of him sleeping on mum Kate's chest as he clung to life.

Having missed several developmental milestones in his first seven months, little Alfie has been living in a coma for over a year after suffering from a mystery illness. The family claims that he started making "jerking, seizure-like movements" and was subsequently taken to the doctors. However, they were told that he was a "lazy and a late developer."

Ultimately, Alfie was diagnosed with a chest infection in December 2016 that caused the seizures and was immediately placed on a ventilator at Alder Hey Children's Hospital in Liverpool.

Alfie was born on May 9, 2016, with a degenerative neurological condition that doctors had not diagnosed previously. Medical experts believe that he might have a mitochondrial condition similar to Charlie Gard.

Tom Evans, Father of Alfie Evans, speaks to media outside Alder Hey Children's Hospital on April 26, 2018 in Liverpool, England. Tom Evans the father of seriously ill, 23-month-old, Alfie Evans has said he will meet with doctors to discuss taking his son home. The Court of Appeal has upheld a ruling preventing Alfie's parents taking their son for treatment to Italy. (Photo by Anthony Devlin/Getty Images)

Once he was admitted to Alder Hey, his parents were told that he was not going to survive. However, the brave little guy fought hard to beat the infection and started breathing autonomously. 

As luck would have it, Alfie caught another chest infection and was placed on life-support once again when he began having more chronic seizures. Doctors at Alder Hey opined that it was in his best interest to stop mechanical breathing.

Mitochondrial DNA depletion syndrome is a group of autosomal recessive disorders that cause a significant drop in mitochondrial DNA in affected tissues. These syndromes affect tissue in the muscle, liver, or both the muscle and brain, respectively. 

The condition is typically fatal in infancy and early childhood, though some have survived to their teenage years. The condition is rare only 16 people, to date, have ever had the condition. There is currently no curative treatment for any form of MDS, though some preliminary treatments have shown a reduction in symptoms. One of these is Nucleoside bypass therapy.

Little Alfie's case was supported by thousands and even caught the attention of Pope Francis. He pledged his support to keep the toddler alive.

The Holy Father tweeted: “It is my sincere hope that everything necessary may be done in order to continue compassionately accompanying little Alfie Evans, and that the deep suffering of his parents may be heard.

"I am praying for Alfie, for his family and for all who are involved.”

Alfie's father visited the Pope on April 18 and begged him to "save our son".

Pope Francis used an address to say that the toddler's situation was "very painful and complex". He also asserted that terminally-ill patients must be treated "with unanimous support" from medical experts and their families.

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