Archie’s first steps of his medical treatment in US
A family who managed to involve the whole community in their cause flew to the United States for the first step of their boy’s medical treatment.
In December, the lives of Una and Kenneth Ennis were changed forever when they were told the mobility issues faced by their son Archie (7) are caused by a genetic disorder, Duchenne Muscular Dystrophy (DMD).
Doctors told Una that Archie will likely be in a wheelchair by the age of 10, that his life expectancy is early 30s, and that he will need a breathing machine as the disease progresses.
A glimmer of hope was given to the family by a treatment available in the United States, a gene therapy only approved last year, for a starting cost of €3.2 million.
The family have raised over €600,000 in two months, and fundraising events are taking place weekly across Tallaght to keep that amount growing.
On Wednesday, February 5, Una informed Archie’s supporters that the family was taking the “next step” as they flew to the US for a gene therapy test, which will make sure Archie is eligible for that life-changing treatment.
“As a mother and father to have to take our sweet little boy out of his own country to get a test done is so unfair and heartbreaking,” she wrote on Facebook.
Players from Kilnamanagh and Marks Celtic women’s football teams during a fundraising match in Sacred Heart on Sunday
“To the Irish government and HSE please help our boy, please do something to get some sort of medication to help slow this condition down. Not only for Archie but for all the other boys suffering from this condition.”
While the Ennis family are away, about €2,000 more was raised for Archie in a charity match organised by Marks Celtic FC and Kilnamanagh AFC Ladies’ teams.
The two teams played each other on the Sacred Heart FC pitch in Killinarden on Sunday, February 9, setting up an entrance fee for players and supporters, raffles and prizes.
“Una is one of our players and seven out of 36 players were members of the Ennis’ family,” said Nadia Brophy, one of the organisers from Marks Celtic.
“It’s an important cause for all of them and the whole of Tallaght has been hit by it. We’re hoping it will expand elsewhere soon.”
“Some of the prizes left from our raffle were dropped at the Jobstown Community Centre where there will be a tattoo fundraiser event for Archie next week.”
To support Archie’s cause, visit HERE.
