The parents of a seriously ill little boy are trying to raise awareness and funds to get their son a diagnosis which could save his life.
15-month-old Alfie Evans was born “healthy and on time”, according to dad Thomas Evans.
“This was a day we looked forward to for 9 months. He grew and fed well, but didn't meet milestones. Alfie was a very sleepy baby who loved his sleep and when he was awake he was an agitated baby”, Thomas explained.
After a while, his parents noticed some issues which concerned them.
“After a couple of weeks, we noticed he wasn't doing things he should e.g lifting his head up, looking at us for more than 20 seconds, grabbing his dummy, making gaga noises etc.
“We also noticed he was doing a jerking movement with his hands, arms and legs and eyes would roll up. He always had his hands clenched into a fist too”.
Mum Kate took him to the doctors three times but each time doctors said Alfie was just “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.
"This went on until Alfie got a chest infection. The infection led him to have a myoclonic jerking spasm”, Tom said.
Alfie was admitted to the intensive care unit at Alder Hey Children’s Hospital in Liverpool last December and was placed on life support.
Doctors informed his parents that he would pass away by the New Year so they had him christened.
However, the little fighter pulled through and came off a ventilator after several months. His parents saw signs of improvement such as him opening his eyes and moving.
Alfie, who is still undiagnosed, is now seriously ill again and back on the ventilator.
Doctors have suggested withdrawing his life support but his parents are adamant that their son can recover.
The hospital have advised the family to hire lawyers and dad Tom is terrified that his son could face the same fate as little Charlie Gard.
“I’m worried because I think Charlie might have had more of a chance than my son, who doesn't even have a diagnosis - I’m worried about Alder Hey doing the same”, he told The Mirror.
The family have been fundraising for a diagnosis and treatment for little Alfie but in recent days he has taken a turn for the worse.
In a Facebook post, Tom wrote: “Our gorgeous warrior is not doing good.
"His heart's sitting low, 50-80, he's not doing his stretches and he's not breathing and the doctors think this is his brain.
"We just don't know how to function. We are praying Alfie isn't showing signs of going on us”.
This morning, a friend of the family provided another update saying that Alfie was “still fighting but very poorly”.
Alfie’s supporters intend to tweet influential people to ask for help using the hashtags #AlfiesArmy and #SaveAlfieEvans at 8pm GMT tonight.
We are thinking of his family at this difficult time.
