A big thank you to Hayley Monk, and her family, who feature in this Cambridge News article (16 May 2018). Hayley’s son, Ethan, was diagnosed with Williams Syndrome two years ago and joined the Imagine ID study soon after.
After completing our online questionnaire the family received a personalised report for Ethan. Hayley explained:
“The IMAGINE ID report was the first we’d received on our son that was a true description of him – his strengths as well as his weaknesses. It means that I can stop repeating myself by giving anyone new to Ethan a copy of the report. I can just say ‘this is Ethan in a nutshell.”
Hayley talks about using this report to share with Ethan’s teachers so that they may better understand what having a rare disease is like for him.
Spreading the Word
The Imagine ID study is collecting information about a large group of children with intellectual disability. It aims to find out how genetic changes affect children and young people’s behaviour in the hope that this will help with the care of families and children now, and in the future. Collecting this knowledge from parents will provide greater insights into these genetic conditions and the sort of issues that are most important for families. Hayley said:
“If we can help spread awareness of the study then, why not? I hope other parents and carers will be encouraged to register for the study. I’m keen to do what we can to support any research that could help other families in the future.”
This month celebrates International Clinical Trials Day (20 May) and Williams Syndrome Awareness UK (18-20 May). Hayley’s article not only shares her experience of being a part of the Imagine ID study but also raises awareness of these events so that more people can benefit.