‘You just think so far ahead and think how long will we have him for and what will his quality of life be like’

A heartbroken mother from Tara whose toddler was diagnosed with an incurable life limiting condition is calling for better supports for families of children with disabilities.

In February, 2023, Zoe and Gordon Brangan's son Darragh was diagnosed with Duchenne Muscular Dystrophy at the age of 18 months, a genetic disorder characterised by progressive muscle degeneration and weakness due to the alterations of a protein that helps keep muscle cells intact.

The diagnosis that came when Zoe was 34 weeks pregnant with the couple's youngest daughter Katie, leaving the parent's devastated.

One in every 3,500 baby boys are born with DMD world wide. There are in excess of 250,000 children and young adults living with DMD.

In The Republic of Ireland, at this time there are known to be approximately 110 people living with DMD; the majority of these are under 18 years of age.

Since the shock diagnosis the family has been coming to terms with Darragh's condition and are determined to raise awareness of Duchenne Muscular Dystrophy and do their part to help other families in the same situation. As part of those efforts Zoe is taking part in the upcoming Women's Mini Marathon in June. Over €26,500 has been raised so far with some of this money going towards adapting the family home to accommodate Darragh's changing needs.

"We left the hospital with Darragh who was diagnosed with a life limiting condition where he will progressively get worse and it was so lonely," said Zoe. " We are trying to build a community of support for people and try to raise funds to give to families of newly diagnosed children."

Zoe - acting on a mother's hunch - took her little boy to her GP for blood tests last year when she felt something was wrong.

"A mother's instinct kicked in I suppose and I always knew there was something wrong but I would never have thought it would be this," said Zoe also mum to Ellie (4) and Katie (1).

"Last February when I was 34 weeks pregnant with Katie our third baby I decided to follow up some issues Darragh had been having," she added.

"He had always been a bit unsettled as a baby and I'm a nurse in a GP practice so I always had him in and out. He had bloods taken one day and within hours we were rushed straight into Crumlin where it looked like he had some kind of Leukemia to begin with."

Nothing could have prepared the couple for the news they were about to receive as Zoe explains:

"We were in Crumlin for a week and I had been by Darragh's side the whole time on on this day I went home just to get into bed for an hour and Gordon rang me and said a neurologist had been in and she reckoned Darragh has Duchenne. I have previously cared for boys who have had Duchenne and instantly I just knew what that meant. It was just absolute devastation.

"You just think so far ahead and think how long will we have him for and what will his quality of life be like. We always thought we would stand on the sidelines and watch him playing for Skyrne. We wished it then and we wish it now that we could take this from him. We just want him to be happy and have a normal life."

It was ten weeks before test results confirmed the diagnosis and in that time Zoe had given birth to their youngest daughter, Katie.

"It was such bad timing in a lot of ways to be so heavily pregnant but on the other hand I don't know what we would have done without her." said the mum of three. "It definitely lifted us, she added.

Zoe explains how Darragh's condition him impacts his life.

"Life is hard for him. He's two-and-half, he can walk but he can't walk very long distances and he tires really easily. With Duchenne and in Darragh's case we are watching him suffer everyday and we are watching him learning how to do things only to know that everything he is learning he won't be able to do over the coming years.

"The main thing is the falls. Darragh could fall 15 or 20 times a day but he just gets back up each time, he's so resilient.

“At least now he is getting better and putting his hands out to save himself. It's the tiredness and the muscle weakness trying to climb up and down the couch and trying to go up and down the stairs that is just so difficult for him."

Darragh qualified for a revolutionary drug called Translarna, with early studies suggesting that it could slow the progression of Duchenne's Muscular Dystrophy (DMD) by correcting the genetic faults that cause the devastating symptoms.

Initially the European Medicines Agency turned down Translarna due to a lack of evidence, but in August 2014 it granted approval following the submission of new trial data from the manufacturer, PTC Therapeutics.

However last year The Committee for Medicinal Products for Human Use (CHMP) refused to convert Translarna’s conditional marketing authorisation into a full approval due to results of a new study which failed to confirm the drug's effectiveness.

As a result, the medication will be withdrawn from the market, a disappointing turn of events according to Zoe.

"There is no cure for the condition at the moment so they prescribe steroids from about the age of four onwards," she said.

"Because of the type of mutation that Darragh has, he qualified for a medication called Translarna which he started in September and there are only around five boys in Ireland who are on it but that is set to be recalled from the European market. It was meant to be stopped and recalled in March, they got it extended for another two months but after that we don't know what is going to happen.

"There are studies going on into new ways to treat Duchenne but everyday that passes, Darragh's muscles are deteriorating more and more, it's today we need the advances."

Adaptions will have to be made to the Brangan's family home in Tara to accommodate Darragh's needs, another reason why the family is fundraising.

"We live in a dormer bungalow and it's completely unsuitable for a wheelchair which unfortunately Darragh will need so we are trying to change it all completely," said Zoe.

"Any housing adaptions for children in Ireland are all means tested so we don't qualify for any financial support. We need to get Darragh's bedroom downstairs and we need to widen door among other things.

"The other thng that we are really trying to do is raise awareness about the condition and on a broader scale about disability.

There is very little support for families."

Darragh's mum says her little boy is just like any other toddler his age in many ways and has captured the hearts of all those around him.

"He is just amazing, he lights up the room and he is loved by everyone around him," said Zoe.

"He is so resilient, cheeky, loving and affectionate and all he wants to do is hold your hand," she added

"Whether it's three o' clock in the middle of the night or nine o clock in the morning, he says hold my hand. He loves kisses. He loves tractors and diggers and bin lorries!"

The Tara mum says Darragh's diagnosis has changed how she and Gordon go about their lives.

"It has taught us to see the strength we have within ourselves and within each other and the good in people," said Zoe."Neighbours dropping up stew and leaving it at the back door and leaving up shopping, we have such a great community around us.

"It changes completely how you think about life. I don't know how we are still standing but somehow we are."

To donate to Zoe's fundraiser click here