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As many of you will know, in the summer of 2022 we spent nearly 6 weeks in hospital and Oscar was ultimately diagnosed with a rare metabolic condition called glycogen storage disease, type 1A. If you have GSD you’re unable to breakdown the complex sugar molecule glycogen. This means Oscar cannot access energy stores like most of us and he is constantly at risk of hypoglycaemia as well as many other side effects if his condition is not managed well. Because of this Oscar has a very meticulous feeding regime, with him now having to be on continuous feeds via his NG tube for the majority of the day and night. As you can imagine having a toddler connected to tubing most of the time is incredibly challenging!

Oscar has already had two operations and is on the waiting list for another one. He has to have a medical procedure every month and is on various medications. We used to have to prick Oscar to test his blood sugar multiple times a day, although thankfully now he has a continuous glucose monitor which allows us to see his blood sugar via an app. We also have to be very mindful of Oscar picking up any normal bugs/illnesses as this means even more careful management is required and sometimes hospitalisation. Despite all of this Oscar is the most cheerful little boy and our aim is to give him the most normal life we can.

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.

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