Our son, Henry was diagnosed with Barth Syndrome after being admitted to Leicester Royal Infirmary CPICU with dilated cardiomyopathy. Following genetic testing, we discovered that this rare condition was the cause of his chronic heart failure.

Henry was due to attend an appointment with the Barth Syndrome specialists in Bristol the same week he tragically passed away, just four weeks after his diagnosis. He was 19-months-old and had just become a big brother to Arthur.

Barth Syndrome is so rare that even many doctors and consultants who cared for Henry had never encountered it before. We want to honour Henry’s memory by raising awareness of this devastating condition and supporting the Barth Syndrome Foundation, which funds vital research, family support, and the development of advanced treatments.

Your donations will go towards:

No amount is too small - every donation helps support other children and families facing this rare condition. Together we can make a difference. Thank you for keeping Henry’s memory alive and helping us bring hope to others.

Hannah & George Walsh