BEN McAleenan’s mum, Gillian, has said that their experience of a specialist therapy in London was the most challenging but rewarding experience of their son’s life.
Six-year-old Ben was diagnosed with an ultrarare genetic condition called Pitt-Hopkins Syndrome (PTHS) when he was four years old. Since then, the family has been on a journey to find a way for Ben to take his first steps.
They discovered the intensive therapy unit in London called Napa (Neurological and Physical Abilitation), which is a world-renowned paediatric therapy. The McAleenan family from Castlewellan raised over £55,000 through their GoFundMe page ‘Ben’s Journey to 1st Steps,’ and that money helped to pay for the October trip to Napa.
They recently returned from London, and Gillian told the Mourne Observer how special it was for her son. “It was the most incredible, phenomenal experience,” she said. “It has filled us with so much hope for what is possible. If we get the right help, then anything is possible for Ben. They were saying that absolutely this child has all the components to get there (to walk); we just need to find what works for him.”
Pitt-Hopkins Syndrome is a neurodevelopmental condition that causes delayed motor development and moderate to severe intellectual disability. Ben gets special care every day in school and physiotherapy once a week. But this experience was going to be a lot different for him.
Gillian, Niall, and their other two sons were over for the first week, so they were there to help Ben settle into the therapy. He experienced three weeks of intensive therapy for four hours a day—two hours in the morning, a two-hour break, then two hours in the afternoon.
Gillian said, “I had high hopes for it, but I didn’t quite know what to expect. I was a bit anxious. I didn’t know how he was going to respond to it. I knew it was going to be difficult.”
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