09/10/2026
๐ โIโm just really grateful that I did take part. They may not find anything, but if they do find something, it gives you the information that you need to look after your child.โ
When Elaine Hess joined the Generation Study at UHDB during her pregnancy, she hoped to support research that could help future generations. What she didnโt expect was that the study would help identify a rare genetic condition in her newborn son, Aidan, just weeks after he was born.
The early diagnosis meant Aidan was able to access specialist advice, treatment and support sooner, helping his family understand how to keep him safe and well.
UHDB has recruited more than 3,800 local families to the Generation Study, which is exploring whether whole genome sequencing can help identify rare genetic conditions in babies earlier and improve outcomes for children and families.
Read Elaine and Aidanโs story below ๐
https://www.uhdb.nhs.uk/latest-news/baby-boy-receives-life-changing-treatment-after-mum-says-yes-to-gene-study-21396