‘We are devastated, we wanted our boy to have the best life’ says mother Una

“When you think about the life a boy was going to have, it’s devastating,” said the mother of a seven-year-old who was diagnosed with muscular dystrophy.

The life of a family was changed forever two weeks ago, when Archie Ennis’ parents were told that the mobility issues faced by their little boy 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.

Una, Archie’s mother, was told by doctors that he 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.

“It’s very hard to take,” said Una. “No boy deserves this.”

“We are devastated, we wanted our boy to have the best life.

“To find out that his life is going to be shortened by a genetic condition…,” she added, as her voice broke with emotion.

The family started noticing Archie’s mobility issues over the past year, as he struggled going up the stairs and standing up.

When they didn’t see any progress through physiotherapy and occupational therapy, the doctors started suspecting something wasn’t right.

Una recalled the moment when after several doctor appointments, she asked the paediatrician who diagnosed Archie if she should be worried. “The doctor said ‘yes’.”

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.

After being in touch with a doctor from Los Angeles, Una was informed that Archie would be eligible for the gene therapy which has 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 Archie’s cause.

To date, they raised over €425,000 through more than 16,000 donations.

While their current target is €450,000, Una explained they will keep raising it every time they reach a new target.

The treatment is a one-off which will require the family to stay in the US for the following two weeks to monitor Archie’s response to it.

“As parents we want to show Archie we tried everything to stop this from happening,” they wrote on the fundraiser page.

“It’s the only thing that it’s out there, it’s the only thing we can do to help him,” she told The Echo.

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.

“Once it progresses, it can’t be reversed,” said Una.

“The doctor in LA said they are noticing a slight improvement in the patients who received the treatment.

“Archie is just a happy little boy, who is having fun at this time of the year like every seven-year-old, and playing with his friends,” she added.

Due to his age, Archie is “kind of oblivious” to his condition, she explained, “but he is determined to keep going.”

“He knows he needs help in some cases, like when he uses the elevator at school, and he asks, ‘is that ok mummy?’”

Una thanked her family, friends, and the community for the great support. “We would feel even worse if it wasn’t for them,” she said.

She encouraged parents to look out for early signs when mobility issues arise, as sometimes there might be more behind it than just some children being “slower” than others.

To support Archie’s cause, visit HERE.