Thanks for taking the time to visit my JustGiving page.

My story is inspired by my Mum, Joan, who suffers from a rare type of Glycogen Storage Disease called Pompes. It is a degenerative muscle wasting condition that causes individuals to experience progressive muscle weakness, severe fatigue and difficulties with breathing.

My Mum has always led an active lifestyle. She played tennis to County level and, despite being unable to run, even competed at Wimbledon in the over 40's. However, she couldn't understand why she was having so many difficulties and battled with fatigue and mobility problems throughout my childhood. Eventually in 2006, after over 20 years of suffering, she was diagnosed with Pompe's disease but we were told that there was nothing they could do and she would get progressively worse.

Thankfully, through the work of the Association for Glycogen Storage Disease (AGSD) and people fundraising, lots of research has been carried out in the area and a possible treatment was developed. The treatment is still in its early days and although not a cure, is a starting point for further developments in future.

My Mum spoke at the AGSD conference in October about living with Pompe's disease. She desperately wants to encourage people, particularly those suffering from a disability, to stay as active as possible and focus on what they can do, not what they can't! I know if she could do the bike ride, she absolutely would!

Instead, she completed a 'Pompathlon' earlier last year to raise awareness of the condition. This involved a 60 length swim, 60km bike ride and 6 mile walk over 3 days, an incredible feat considering the barriers she was up against. I want to take it a step further and raise some money for the association, in the hope of one day finding a cure for glycogen storage diseases.

I massively appreciate any support you can give.

Thanks in advance.

Lucy

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