A young Tullysaran man is preparing for a tandem skydive as he aims to “do my bit” to help a Co Tyrone boy born with a rare and life-limiting condition.
Kevin McGuinness will be scaling the heights in October to raise as much money as he possibly can.
And the fundraising will assist four-year-old Pearse Connolly, from Dungannon, who is courageously tackling the challenges of living with X-linked Myotubular Myopathy (XLMTM).
Kevin works in Pearse’s school and undertakes direct payment work too for a few hours daily, assisting the family in any way he can.
“We are fundraising to provide ongoing therapies, specialist equipment and support to help Pearse reach his full potential and continue showing XLMTM what he’s made of!,” he explained.
Among the specialised equipment they have set their sights on for Pearse, who is on a ventilation machine, is a tricycle, adapted with breathing apparatus.
Kind-hearted Kevin wants to do what he can to help make a difference and ease the pressure on Pearse’s family while improving his quality of life.
He told Armagh I : “Because I’ve been working with Pearse, I’ve been seeing a lot of things and a lot of opportunities that he has missed out on because there isn’t the resources available for him.
“I’ve seen their struggles; dad always working, and mum works day and night to support him, looking after him. He is on 24-hour care.
“I just want to be able to do my bit and raise a bit of money to help get him the help he needs and deserves and to try and give mum a bit of a break and take some of the weight off their shoulders.”
Kevin is hoping that people will respond kindly with their donations.
And when totalled, the money will be added to the family’s overall fundraising goal of £25,000, with a drive launched under the umbrella of ‘Pushing Pearse’s Potential’.
Pearse 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 and affects his breathing, ability to swallow, movements and mobility.
At four months old – and after a very traumatic and difficult time in hospital – Pearse was sent home for ‘end of life care’. He was not expected to survive more than a few days.
But, according to his family: “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. 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.
“So here we are, Pearse is four now and living a trache/vent and PEG/blended diet life that is full of happiness and love.
“In order for Pearse to reach his potential and live his best life in spite of 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 we can for as long as possible and we want him to have a wonderful life where as many options are open to him as possible.”
Kevin hopes that his efforts will go some way towards making that goal a reality.
He said: “I’ve set up a GoFundMe page and then I’m just going to pay for the skydive out of my pocket and do the jump.
“It will take place in Coleraine in October but they have to confirm the date. It will be on one of two days, just depending on how many people are also going to be jumping around that time, so it just needs finalised closer to the time.
“This will be my first jump. I’m excited, obviously a wee bit nervous too, but excited. It’s something different.
“I would be incredibly grateful for any support, whether that’s through donations, sharing our fundraiser, or cheering me on. Every contribution, no matter how small, will make a real difference to Pearse and his family.”
If you would like to support Kevin, you can do so here.
