Parent carer, Hayley Monk, wrote this article about her family’s experience with the Imagine ID study. Her son, Ethan, has a chromosome disorder.
Hayley writes: “it was the first report that we had on our son (and we’d had lots by then!) that was a true description of him.”
She highlights how useful they find the personalised report when updating Ethan’s EHC plan and for sharing his challenges as well as strengths with new professionals and carers. It “has helped (teachers) to see the bigger picture that is our child and understand what his relatively rare syndrome actually means for him.”
The personalised report, sent after the family completes an online questionnaire, allows them to celebrate progress made. “Looking back at the report now, 18 months or so after it was produced, I am able to see the progress that Ethan has made and reminded of some of the difficulties we were struggling with at the time that are no longer so much of an issue, which gave me a bit of a boost.”
Hayley also recognises the vital role her family plays within research: “I was keen that we do what we can to support any research that could help other families in the future. “
The Imagine ID study is collecting information about a large group of children with intellectual disability. The research is looking at how genetic changes affect children and young people’s behaviour and aims to help with the care of families and children now, and in the future.
The article was published in Lancashire County Council’s Family Information Network Directory (FIND) newsletter (page12): FIND Spring 2018
Is your family eligible?
You can join the study if your child has intellectual disability with a genetic cause and is aged 4 or over.