‘Our son has defied the odds after being born with a rare life-limiting condition’

The four-year-old is one of only two boys in Northern Ireland with this condition

This is four-year-old Pearse Connolly, who has been defying the odds since birth.

The little Co Tyrone lad was diagnosed with severe X-Linked myotubular myopathy(XLMTM), a rare neuro muscular condition that affects the muscles and causes severe hypotonia. It is considered a life-limiting condition. XLMTM affects his breathing, ability to swallow, his movements and mobility.

Most children born with it don’t survive past infancy. Pearse is one of only two boys in Northern Ireland with this condition. He was sent home as ‘end of life care’ at four months old and it has taken a lot of research and work to by his devoted parents, John and Laura from Edendork in Dungannon, get him to where he is now. The couple are also parents to 6-year-old Eve.

Speaking to Belfast Live, his mum Laura explained Perase’s journey so far: “Pearse was born on December 14 2021 at Craigavon Area Hospital. He was resuscitated at birth and spent five and a half weeks in the Neonatal Unit. When he was born, he had pneumonia in both lungs, and the doctors thought his limpness was due to how sick he was.

“As the antibiotics kicked in and they felt his lungs were improving, the limpness remained. He was like what they would have described as like a very floppy child, and he didn’t open his eyes, didn’t really cry or respond to an awful lot.

“Because he was born in December we were obviously expecting to have him home for Christmas, but the doctors decided to do some genetic testing. At 4 months old and after a very traumatic and difficult time in hospital, Pearse was sent home as ‘end of life care’.

“He was not expected to survive more than a few days but he had no intention of leaving us. After a month at home, a new complication put Pearse back into hospital and we were there for the next six months.

“He was not expected to survive more than a few days but he had no intention of leaving us. After a month at home, a new complication put Pearse back into hospital and we were there for the next six months.

“Pearse wasn’t officially diagnosed until he was 10 months old, so we actually had to do an awful lot of guesswork in the beginning. We always say that Pearse is actually rare in a rare world. During his first year, Pearse was intubated countless times and we lost count of the amount of drains his lungs needed.

“His life at that time was full of needles, tubes, drains and trauma. But despite it all, he was resilient and showed he had remarkable potential. We just knew we had to do everything possible to provide him with the best life possible.

“Now here he is at four years old and living a trache/vent and PEG/blended diet life that is full of happiness and love. Pearse is very affectionate, fun loving, and a happy, contented child. You know, if he cries that there’s something very wrong.

“He loves attention, being involved in everything, loves people talking to him and interacting with him. He loves getting out and about, being out in the car and knowing that he’s going somewhere. He has really thrived at school because they’ve been able to introduce so much to him in terms of technology.”

Unfortunately, his family are now at the stage that in order to keep Pearse strong and well, they need access to ongoing therapies and equipment. They have launched a Just4Children fundraising campaign, called Pushing Pearse’s Potential, to make that happen. It has already raised over £10,000 in six weeks.

Laura added: “Just4Children are fundraising to provide Pearse with therapies and specialist equipment to enable him to reach his full potential and stay as well as he can for as long as he can having a happier life with less restrictions.

“In order for Pearse to live his best life despite all the complications of his diagnosis, he will need ongoing funds to access regular therapies and purchase specialist equipment. We want to keep Pearse as well as possible for as long as possible and we want him to have a wonderful life where as many options as possible are open to him.

“The people of Edendork and the wider Dungannon and Coalisland community have been amazing. What has really taken my breath away at times has been the kindness of strangers, people reaching out who I have maybe never spoken to or ever seen.

“Any support would be greatly appreciated and we really hope the community within Tyrone will really rally behind him. We have already seen that there is real kindness out there and it really restores your faith and changes your whole perspective on everything as well.”

You can donate to Pushing Pearse’s Potential here and follow his journey on Facebook.

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