TOT Alfie Evans’ parents made desperate pleas to move their son from Alder Hey Hospital in Liverpool to Italy for treatment and a possible diagnosis for his mystery condition.
While doctors were unsure of a definitive diagnosis, Alfie was in a semi-vegetative state for over a year and was thought to have a similar mitochondrial condition to Charlie Gard.
Alfie’s Army Alfie Evans’ life support was removed in April 2018 and he died on April 28
What was wrong with Alfie?
Alfie Evans had been living in a coma for well over a year after being struck down with a mystery illness.
The 23-month-old missed numerous developmental milestones in his first seven months, his family said.
He started making “jerking, seizure-like movements” and was taken to the doctors, but his parents were told he was “lazy and a late developer”, the family claim.
But he caught a chest infection that caused seizures and was placed on life support at Alder Hey Children’s Hospital in Liverpool in December 2016.
The 23-month-old’s parents broke the news that Alfie had lost his battle for life to their Alfie’s Army supporters on Facebook on April 28, 2018, confirming the tot passed away at 2.30am.
Devastated dad Tom Evans, 21, said: “My gladiator lay down his shield and gained his wings at 02:30… absolutely heartbroken… I LOVE YOU MY GUY”.
Alfie’s mum Kate James wrote: “Our baby boy grew his wings tonight at 2:30 am. We are heart broken. Thankyou everyone for all your support”.
Facebook Alfie Evans is seen sleeping the day before his tragic death
Getty Images – Getty Alfie’s supporters held a vigil outside Alder Hey hospital on Saturday
Supporters of Alfie Evans hope to get Rob Doherty’s song to number one
What was the degenerative neurological condition he suffered from?
Alfie had a degenerative neurological condition doctors had not definitively diagnosed.
Some experts believed he might have a mitochondrial condition – the same as Charlie Gard – and Alfie was described as being in a semi-vegetative state.
Mitochondrial DNA depletion syndrome (MDS) refers to a group of disorders that cause affected tissues to suffer from a significant drop in mitochondrial DNA.
The DNA is found in the mitochondria of cells – an organelle found in most cells in which respiration and energy production occur.
This means that sufferers do not get energy to their muscles, kidneys and brain.
MDS causes progressive muscle weakness and brain damage.
The condition is rare and Charlie is said to be one of only 16 people to have ever had the condition.
MDS is almost always fatal in babies and young children, although some sufferers have made it into their teenage years.
There is currently no cure but some treatments have shown a reduction in symptoms – one of which is Nucleoside bypass therapy.
Central News Alfie Evans’ family made a last ditch attempt to have their little boy receive treatment in Italy
What are the symptoms of MDS?
Symptoms of MDS usually develop before a baby is a year old.
The disease can cause the slowing down of thoughts and a reduction in physical movement, hearing impairment and seizures.
Other symptoms include problems with blood glucose levels, persistent vomiting and a failure to thrive when babies are in their first year of life.
The NHS says a lack of energy is a common symptom on the outside, but MDS can cause “any symptom, in any organ, with any degree of severity, at any age”, with those affected gradually losing the ability to eat, smile, communicate, swallow and breathe.
But many of the symptoms are common to other diseases so MDS can often be hard to diagnose.
Instagram Dad Tom Evans kisses his son Alfie in this photo shared by the family online
Kate James shared a heartbreaking poem about her tragic son Alfie
Mercury Press The Pope paid tribute to Alfie, saying he was ‘deeply moved’ by his death