Mother’s joy as ‘dystrophy’ donations for son hit €600k

A mother who recently found out about her son’s muscular dystrophy is “overjoyed” with donations from the community hitting the target of €600,000.

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).

DMD causes rapid, progressive muscle degeneration and weakness, starting from legs, hips, and shoulders, until it reaches the lungs and the heart.

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 which is only available in the United States, a gene therapy only approved last year, for a starting cost of €3.2 million.

While initially they “couldn’t fathom” their next steps, on St Stephen’s Day the family set up a fundraiser asking the community to help their cause.

To date, they raised over €600,000 between an online fundraiser page and a Revolut account.

Archie

More than simple donations, several fundraiser events are being organised weekly by different community groups across Tallaght and that’s what’s really making a difference for the family.

“Our world has been turned upside down,” said Una.

“But we wouldn’t be where we are now without the support of the community.”

Only on Friday afternoon, January 31, the Newcastle-based musical group RAMS in Rhythm raised €2,000 by “singing their hearts out for Archie,” as they named the event, at The Square.

Sports clubs are becoming involved too, with a Ladies charity match taking place on Sunday, February 9 in Sacred Heart FC.

IN TUNE: ramS signing the tunes during a fundraiser for Archie

Marks Celtic FC will play Kilnamanagh AFC from 2.30pm and the match, which has an entrance fee of €10, will be followed by a raffle.

The Ennis’s were told by doctors in the US that they will need to stay there for some twelve weeks following the gene therapy, which means there will be additional costs to be covered.

In the last few weeks, Una noticed Archie is becoming “weaker in standing up and struggles completely to go up the stairs.”

“It’s very hard to take,” Una told The Echo following the diagnosis. “No boy deserves this.”

“As parents we want to show Archie we tried everything to stop this from happening.”

The gene therapy won’t eradicate the Duchenne Muscular Dystrophy, which can’t be cured, but it will slow its progression down and keep Archie at the early stages he is at now for longer.

To support Archie’s cause, visit HERE.