Julie Garfield has been making bag tags for Pompe children to go back to school.
For the AGSD-UK Family Day at Great Ormond Street, lots of families came along and friendships and support networks were created.
Ismail lives with Infantile Onset Pompe Disease. Aged 19, his abiding passion is football. He plays using an adapted wheelchair.
Families attending Great Ormond Street or Birmingham Children’s hospitals are welcome to come along to family days this autumn.
Children and families from North East England got together for a Family Fun Day at the Royal Victoria Infirmary, Newcastle.
“So Chocolate Bar” – 6 years later and one boy’s idea to help his friend with GSD1b is leading to scientific breakthroughs.