Mother's heartfelt plea raises more than €400k for son Archie 

Archie Ennis, who has recently been diagnosed with Duchenne Muscular Dystrophy. Picture: GoFundMe

A heartfelt plea for support from a mother raised more than €400k in just a few days on GoFundMe — but the reality is, that huge amount is only a fraction of the overall cost needed to treat her son Archie.

Una Ennis has taken to social media to describe how she and her husband Kenneth were told their eldest child has Duchenne Muscular Dystrophy on December 10.

In a two-minute video posted on her Instagram, Ms Ennis said Archie, who is seven, was going to deteriorate, and the only chance he had to survive was to undergo a staggering €3.2m treatment in the US.

Instead of preparing for another joyful Christmas with Archie and his sister Maisie, aged three, Ms Ennis recorded herself sitting in the front seat of her car, asking for help.

It was a moving story that touched thousands of people.

Donations immediately flooded into the child’s GoFundMe page raising almost €410,000 so far.

The money is for groundbreaking gene therapy in Los Angeles that will slow down his condition, which is an uncurable weakness of the muscles.

Ms Ennis said she will “never forget” receiving the earthshattering diagnosis for her eldest child, before Christmas.

“We waited for four weeks to get the results, but we knew for a long time something was wrong.

“He was unsteady, and he was regressing, and we have been chasing this diagnosis since he was small. We finally got it on December 10.

“We thought he might have dyspraxia or autism, but a doctor in Tallaght hospital said they didn’t believe it was either of those.

I asked the doctor, ‘do you think I should be worried?’ and she replied ‘yes’ and then she explained that she believed Archie’s condition was worse than dyspraxia or autism.

Duchenne muscular dystrophy (DMD) is a genetic disorder which results in a progressive muscle degeneration and weakness.

There is no cure for the condition due to the alterations of a protein called dystrophin that helps keep muscle cells intact.

It affects one in every 5,000 children and is seen in boys more so than girls.

“Our whole world was turned upside down,” said Una. “We just started looking for ways to help him, and to reach out to other parents in the same boat.

“Every child deserves a chance and deserves treatment.”

Seven-year-old Archie Ennis, with his sister Maisie, dad Kenneth, and mam Una. 

“The entire diagnosis is negative,” she said. “We are now communicating with the children’s hospital in LA who are willing to treat Archie.

“When the doctors told us there is no cure for this, they did say you can try and fundraise yourself, it’s an awful lot of money but there is specialist treatment out there, and it’s a gene therapy that he needs, a one-off vaccination that will slow down the progression.”

The cost for this therapy begins at €3.2m and the Ennis family has been in touch with clinical professor of neurology and pediatrics in LA, Dr Maria Ramos-Platt.

“She told us Archie is eligible for treatment,” said Ms Ennis. “But the cost of treatment doesn’t include our accommodation and the time we need to spend there; Archie will have to be observed for a few weeks.”

While they have a strong family and community behind them, Ms Ennis knew she would have to make a public appeal to get the funds to go to the US.

“We have already lost time,” she said. “Archie is showing signs of muscle weakness, so we need to go soon.

“He knows something is wrong, he will ask to be lifted upstairs, and tells his friend he can’t run like the other boys, his muscles get tired, and he asks, ‘is that ok mam?’”