Co Tyrone boy with very rare condition was not expected to survive more than a few days 'but he had no intention of leaving us'
A Co Tyrone family has launched a campaign to help raise funds for their four year old son who suffers from the very rare congenital X linked myotubular myopathy.
Little Pearse from Edendork, Dungannon, is one of only two boys in Northern Ireland with the life-limiting condition.
His mum, Laura, said he was sent home from hospital as end of life care at just four months.
She continued: “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 6 months.
"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.
“He is now four years and it has taken a lot of research and work to get him to where he is now,” she said.
Unfortunately his parents, Laura and John Connelly, are now at a stage that in order to keep Pearse strong and well they need access to ongoing therapies and specialist equipment.
They have launched a ‘Pushing Pearse’s Potential’ fundraiser on Just4children here and are hoping the community in Tyrone will rally behind them.
A target of £25,000 has been set and already the donations are beginning to come in.