The mother of a six-year-old Castlewellan boy born with a rare genetic syndrome has said her family is “overwhelmed” by the response to a fundraising campaign to help pay for life-changing therapy.
Two years ago, Ben McAleenan was diagnosed with an ultra-rare genetic condition, Pitt-Hopkins Syndrome. The disorder causes, amongst other things, developmental delays and breathing problems, and in Ben’s case, he is unable to walk, has low muscle tone, and is non-verbal.
He receives special daily care, including physiotherapy at his school, Parkview in Lisburn. Ben has been allocated a space at an intensive therapy unit at The NAPA (Neurological and Physical Abilitation) Centre in London, which his family hopes will help him on his journey to taking his first steps.
His parents, Gillian and Niall, have planned a series of fundraising events to raise money to help pay for the treatment. They set up a GoFundMe page with a target of £50,000.
In the full story find out how treatment will help Ben, and how much they have raised.
