Thanks for taking the time to visit my JustGiving page.

My sister Rachel and I were diagnosed in August 2016 with Pompe Disease.

Pompe Disease is extremely rare and affects our muscles and our lungs.

Looking back this disease probably started to weaken my muscles when I was 18, but to be honest I just thought I was lazy and unfit.

My progression has been slow, so over the past 15 years my muscles have been wasting, whereas my sister's only started recently but has progressed a lot faster.

There are many challenges we face, such as those heard in our Christmas song, the most obvious being that we struggle to get out of a chair and climb the stairs. 

Some struggle with breathing due to that fact that our diaphragm and muscles surrounding the rib cage become weak, therefore a bipap machine is required to assist us with breathing.

As I said we face many challenges, but one of the bittersweet things to have come out of getting diagnosed with Pompe Disease is that we have a FANTASTIC support network in each other. We communicate with others across the world with Pompe Disease. 

Association for Glycogen Storage Disease (AGSD) helps to support us in many ways and we would LOVE it if you can help to support this small charity..

We hope you enjoyed listening to us having a real laugh and embarrassing ourselves in our video hehe.

Thankyou 

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