Growing up around Huntington's disease can be tough for children and young people. There are so many questions about the chaos happening around them, but sometimes it can feel like Huntington's is hidden in the shadows.
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Josh is eight. His mum, Gemma, has Huntington’s disease. Josh is an energetic and fun loving child, but his school had noticed a change in his behaviour after the summer holidays, so the school contacted our Youth Engagement Service.
Lilly met with Josh and his mum. Gemma explained how she was worried Josh would be taken into care, as this had happened to her when she was young as her mum had Huntington’s and she was terrified the same thing would happen to Josh. Lilly explained that they would work together, with Gemma and her wider family to put safeguards in place so Josh was supported at home and at school. By talking about the problems they faced together, Lilly was able to provide practical advice and signpost to other services to ensure the family were given all the support they needed.
This reassurance helped Gemma move forward with her life and Josh was relieved to see his mum coping well and not as anxious. Josh got back on track at school and is doing well.
The Huntington Disease Youth Engagement Service aims to educate, support and empower young people in a Huntington's family, between the age of 8-25.
Our specialist youth worker, James O’Connor, provides practical and emotional support for children and young people across England and Wales.
James works with families to find out the things that children may be struggling with and work flexibly to ensure they can meet at the best time for the children and young people. Emotional support is critical, as they prepare with families to tell children that Huntington’s disease is in their family. They can give support to the parents as well as children and advise on language and provide reassurance.
James is involved in education, welfare and safeguarding and acts as an advocate for the children and young people, often signposting to services such as young carers. He can work with teachers (and other professionals) to ensure they fully understand the disease and how it is affecting the children. He also creates opportunities for young people to meet, to share experiences and create peer networks to help them explore the complex world of Huntington’s disease.
A film by A House Called Alice