MOVED TO VIRGIN MONEY GIVING
AGSD-UK Cycle Challenge
Pompey to Pompeii for Pompe
1400 miles from Portsmouth, England, to Pompeii, Italy
When our son lay in the Portsmouth intensive care unit at the age of two, we had never heard of Pompe Disease, let alone Glycogen Storage Disease. But then neither had the medical staff caring for him. Once we were transferred to Great Ormond Street Hospital we did get a diagnosis, but that was all. No emotional support, no meaningful prognosis, and nothing to help him recover. Pompe disease is progressive and medical books told us not to expect him to reach his 20th birthday.
However after meeting other families through the AGSD-UK we realised that there was hope, there were beneficial diets, and that we could even help research into a therapy for the disease. You can only imagine the way that changed our lives.
Now, at the age of 20, our son has scuba-dived in Ecuador, he plays racquet sports and is enthusiastically following his dream to work in the film industry. I can honestly say that his present good health owes a great deal to the information and support provided by the AGSD-UK.
Patient groups bind together specialist knowledge from families, medical practice and research as well as providing the emotional support that can only be given by people in the same position. Knowing that you are not alone with your rare condition brings comfort and being part of a community focussed on improving your quality of life is empowering.
The UK GSD community has grown during the eighteen years since our son’s diagnosis, and the AGSD-UK has now reached the point where it needs to employ staff to enable it to provide the level of support needed by the UK patients, families and carers. This, of course, requires funds and we are hoping that the Pompey to Pompeii cycle challenge will be a considerable boost to help us realise our vision.
Please help us improve the support to families with Glycogen Storage Disease by sponsoring me on this ride of a lifetime.
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