Mum who is trying to raise €3.2m for son (7) tells of ‘devastation’ at diagnosis

Una and Kenneth Ennis had been told in Tallaght Hospital just over a week ago that their seven-year-old boy had a rare condition called Duchenne Muscular Dystrophy.

“This is a rare genetic condition that will weaken Archie’s muscles,” a devastated Una (31) revealed in a video she posted, which has gone viral. “It will start to weaken Archie’s muscles in his hips and then in his shoulders.

“(The doctor) said his muscles will continue to get weaker. She said that it will progress over time to weaken his heart and his lungs.

"She also told us most boys with this condition will end up in a wheelchair at the age of 10, so as you can imagine we are devastated and looking for help.”

Una and Kenneth have been told that there is a groundbreaking gene therapy programme in Los Angeles that will show the progression of the condition, but it costs a minimum of €3.2 million to start with.

“It’s just devastating, we are just devastated,” Una tells the Sunday World.

“We are just grieving the life that we thought we were going to have for our little boy, and now we are being told this is the life that he is going to have – and we can’t accept it, we need to just try and help him.

“We have really no other option. I think any other mammy would do anything that they could really.”

The family live in Jobstown in Tallaght where Una is a health care assistant in a hospital, while Kenneth (32) is a Sergeant in the Irish Army. They have one other child, Maisie (three).

Una explained that as Archie grew up, he physically started declining. They got physiotherapy for him and also occupational therapy.

In recent months he has been finding it hard to get up the stairs, so the family’s GP referred him to a paediatrician in Tallaght Hospital.

Professor Denise McDonald dismissed that their initial speculation Archie might have dyspraxia.

“I said ‘do you think it’s something worse?’ and she said ‘yeah’. I said ‘do you think I should be worried?’ and she said ‘yeah’,” recalls Una.

“She said ‘Una, I’m going to send off this test and it’s going to take four weeks’ –then last week we went in, she sat myself and my husband down and said what I said in the video.”

The diagnostic confirmation was earth-shattering.

“Our world was literally turned upside down, we never thought that it would be this…”, sobs Una.

“I suppose last week when we first found out we had to kind of keep it together when the kids were here. We had to try and act as normal as possible and then when they finish school, we just try to do stuff.

“The Duchenne Muscular Dystrophy Association reached out to me and kind of had a counselling session with me. The lady from it said, ‘just try your very best to have a good Christmas, as if you hadn’t had this news.

“Archie is so young he doesn’t really understand’.

“We have taken time off work. As any father would be, he is struggling too.”

She reveals other families have reached out to her that are in the same boat.

“There’s one in 5,000 boys affected by this genetic condition, it’s more common in little boys,” she elaborates.

“The professor is a neuromuscular professor and she said there’s 10 boys in her clinic (with the same condition). It’s mainly little boys when they start showing symptoms.

“When they are born with this their mother is the carrier and I didn’t know I was the carrier. I have never been tested, because I have never had anybody in the family that has had this.

She discloses the life expectancy for most people with the condition is in their early 30s.

There is a new drug on the market in the UK which still has to get the go-ahead to be introduced here, but their best option right now is the gene therapy programme in America.

Since Una’s heartbreaking video, over €270,000 has been raised in donations on the family’s GoFund Me appeal link.

“Of course, as a mammy and daddy we are going to have to do anything that we can to help our little boy,” she adds.

“Everybody in the community is really helping, they are doing raffles, and they are just really trying to help us, it’s amazing, the community spirit is really good.”

She also hopes the video she posted of Archie’s struggle to get up the stair will help other families who may not have figured out what is happening their kids in a similar position.

“Maybe they can start treatment sooner so it doesn’t progress and their little boy is going to end up in a wheelchair,” she points out.​

- Donations can be made on the GoFundMe page at https://tinyurl.com/2davss26 or by Revolut @unacl6jg