Meet Stephen
Stephen has Huntington’s Disease and a learning disability. He lives in an adapted bungalow with three other tenants in Tyne and Wear.
Stephen's mum Dorothy shares a moving account of his journey…
“We fostered Stephen when he was a month old (his biological mother had Huntington’s Disease and was unable to look after him herself, and died when Stephen was in his teens). When Stephen was seven, we decided to adopt him. He had a learning disability and behavioural problems, and we could see he would need the long-term commitment of a family.
So my husband Ron and our two daughters Debs and Keren went through the court process. Debs, our eldest (then 16 years old), did the unthinkable and spoke up in court when the judge raised the issue of Huntington’s Disease and Stephen’s learning disability.
She jumped to her feet and said: ‘Mr Judge you might say all those things, but he’s our brother and we love him. If he does get this horrid illness do you think we’d turn off our love for him? He’d still be our brother and we’d still love him.’ The judge looked up and said: ‘What can I say?’ and the adoption was granted.
“Our love has been stressed and stretched over the years. We have had 16 foster children, but Stephen was ours and here to stay. He had a lactose allergy and was hospitalised in Great Ormond Street Children’s Hospital and was on a very strict exclusion diet for many years.
“He didn’t have any obvious symptoms of Huntington’s Disease until about seven years ago. The first affects were when he said his hands were ‘lazy’. He couldn’t process conversation and would choose the last item offered on a list. In his teens he was diagnosed with Asperger’s Syndrome and a learning disability, so it’s not clear when the Huntington’s Disease really started to show. Now he needs 24/7 care. He cannot support himself and needs two carers to help with lifting and moving.
“Stephen’s support workers from CIC do an excellent job – he needs turning at night and his continence protection changed. As Stephen was due to move into his bungalow during lockdown , his occupational therapist was able to visit beforehand and check it out. She very kindly phoned me following her visit as she knew I was unable to be involved. She was a real gem at such a hard time.
“Each week when I talk to Stephen with the help of his carer, he’s very cheerful. Stephen likes talking about cars and places we visited when he was little. He makes cards and does some crafting, with support. He enjoys making chocolate cake and has a good appetite. He’s seems very happy and is well looked after.”