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.
Pearse is aged 4 from Dungannon. He 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.
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 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.
So here we are, Pearse is 4 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. All support for Team Pearse would be so greatly appreciated!
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