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Alfie Evans Had Extremely Rare Condition – Parents: ‘We Never Got the Chance’ to Test Treatment

Image source: Screenshot/ITV This Morning
Image source: Screenshot/ITV This Morning
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By Will Maule
Author

September 3, 2018

The parents of Alfie Evans, the 23-month-old boy who died after a protracted legal batter over his medical care, have announced the arrival of a baby boy. The couple’s joy at their newborn son was mixed with sorrow after discovering that Alfie’s official diagnosis could have been treated had he been kept alive for longer.

‘We Will Pursue Justice for Our Beautiful Boy’: Family of Alfie Evans Say the Fight is Far From Over

Parents Tom Evans and Kate James appeared on British morning ITV talk show, “This Morning”, Monday to talk of their experience and show-off their new baby boy, who has been named “Thomas.”

“They found “two faulty genes,” one from me and one from Tom,” Kate said of Alfie’s final diagnosis. “Only ten children in the world have had it. Five have passed, five are still alive. Treatment has only been tested on two people, but obviously, we never got that chance –  we found out [his diagnosis] after Alfie had passed.”

“In the future, me and Tom have a 1 in 4 chance of happening to more babies,” Kate added.

Then, the clearly delighted couple brought baby Thomas out for the world to see. Tom remarked that his son looks just like Alfie “when he smiles.”

“We are so happy for what we still have. We’ve still got two amazing children and we’ll always have them,” the father noted.

The couple added that they were setting up a charity to help “all children” who find themselves in similar situations to Alfie.

We’ll help them “not after the diagnosis, not after the condition or all that stuff,” Tom said, “we will go there and do everything we can, in Alfie’s name, to save that child.”

“When Tom is older, he’ll be part of the foundation, he’ll be an ambassador,” Evans noted. “This is a job for the rest of our life now.”

A source told the Sun newspaper: “Kate and Tom have been to hell and back over the past 12 months as they battled in vain to keep Alfie alive. They tried everything they could and it tore them apart. They have been left devastated by Alfie’s passing, but also vowed that they would carry on living for their son and are determined his death won’t break them.”

The source noted that Kate “knew she was pregnant in Alfie’s final few weeks” but “wanted to keep it quiet so she could give her all to Alfie.”

Aflie Evans suffered was diagnosed with an unspecified degenerative neurological disorder at around six months, and his parents were quickly informed that nothing could be done for their son. However, when Alder Hey Children’s hospital refused to release Alfie for treatment elsewhere, a brutal legal battle ensued. As the parents fought for full rights to remove their son from the care of the National Health Service (NHS), the NHS racked up a £145,000 legal bill in an extraordinary bid to take the youngster off life support.

With thousands of supporters behind them, Tom and Kate did absolutely everything they could to save their son’s life, including traveling to Rome to appeal to Pope Francis, who held a personal meeting with Tom. Indeed, the Italian government even granted citizenship to Alfie, hoping this would enable him to travel to Italy for further treatment at a Vatican-affiliated hospital.

But after several appeals at every level of the British court system, Alfie was removed from life support. Despite doctors assuring the parents that their son would die quickly, Alfie survived some five days on life support, passing away 28 April, 2018.

The Pope tweeted a direct message to the family of Alfie Evans following passing: “I am deeply moved by the death of little Alfie. I pray especially for his parents as God the Father receives him in his tender embrace,” he wrote.

Many took to Facebook following the latest birth to congratulate Tom and Kate on their new arrival.

“Congratulations on the birth of Alfie’s baby brother,” one person wrote, with another lamenting the fact that Alfie is not here to meet him. “Alfie [was] such a beautiful warrior he will never be forgotten he brought the world together!!” she wrote.

“Congratulations on the new arrival,” another person added. “I’m sure Alfie is looking down beaming with pride.”

In June, Tom Evans hinted at a fresh legal battle against Alder Hey Children’s Hospital.

“It’s been 1 month and 2 weeks since our gladiator was [taken] away from us, deprived, neglected, mistreated and respected!” Evans wrote in a June 16 Facebook post. “We wanted everyone to know that in time as we grieve, we will be speaking out further [about] the build up to Alfie’s death,” he continued,  “and we will be speaking out the truth and in detail about the week that we had to go through, that no other parents should ever, ever go through or imagine!”

Evans wrote that the “world needs to know what happened in those five days and what we did and went through to have Alfie cared for when he proved Drs wrong!!”

One of the most controversial elements of this heartbreaking case was when doctors assured Alfie’s parents that the 23-month-old would last a matter of minutes following the withdrawal of life support. But, to everyone’s amazement, Alfie began to breathe on his own — for days.

“I would like to remind the world [that] those [doctors] told me and Kate and all the courts [that] Alfie wouldn’t last longer than five minutes!” Tom wrote. “He survived a further five days and fought hard. He should have been [given] respect, care, decency.”

Tom stated that instead of helping his son, the hospital “paid £143k on murdering my son and taking our lives away from us!!!!”

“We are not done!” he concluded.

 

 

 

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