Groby parents on children's 'emotionally tricky' diagnosis

Chris and Alex, parents from Groby in Leicestershire, say getting a Fragile X syndrome diagnosis for two of their sons has been “emotionally tricky”, especially after clinicians couldn’t pinpoint an answer earlier. Both children, they say, have significant developmental delays and struggle academically, attend a special needs school, and experience social anxiety. One child has an autism diagnosis, but the parents say it “doesn’t quite fit”. They describe the impact of receiving guidance for life-long care and therapies once a plan is in place. A UK-first Fragile X care hub has been set up at Leicester Royal Infirmary, backed by University Hospitals Leicester.