My nephew, Oscar, in the summer of 2022  was diagnosed with a rare metabolic condition called glycogen storage disease, type 1A. This means his body is unable to release glucose from the liver and he has to feed every two hours to maintain his blood sugar levels. He is constantly at risk of hypoglycaemia as well as many other side effects if his condition is not managed well.

AGSD provide both practical and emotional support across all GSD’s and their variants. They are also heavily involved in campaigning for GSD screening to be added to New born screening. With the increasing likelihood of the advent of gene therapy, initially for GSD1 and GSD3, it becomes even more important to have an early diagnosis.

Rob has stepped up and sacrificed so much in helping both Rachel and Oscar through this; 6 weeks in Bristol Children's hospital, constant back and forth’s to Musgrove since they were discharged. He's been an absolute rock for both of them, I will be supporting him in anyway I can.

A lesser man, and family would have crumbled but the courage and love they have shown for Oscar is incredible.

His condition is so rare that the knowledge of how to deal with it requires a hospital to be within an hour of any travel and holiday they may make, and they need notifying prior. 

They have all missed out on 3 planned holidays, so a small sacrifice for them and those other families affected would be greatly appreciated. 

Thanks in advance for any donation.

Perhaps London Marathon 2024 is calling….👀