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Help my son Cameron by attending the 2015 GFPD Conference

This fundraiser closed about 4 years ago

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How this will help

Our gorgeous boy Cam 17 years old and has a very rare genetic, metabolic condition called a Peroxisome Biogenesis Disorder. This means he's severely disabled, both visually and hearing impaired,...

Our gorgeous boy Cam 17 years old and has a very rare genetic, metabolic condition called a Peroxisome Biogenesis Disorder. This means he's severely disabled, both visually and hearing impaired, and suffers from liver dysfunction, adrenal insufficiency and osteoporosis. He wasn't expected to live much past his 5th birthday, so at 17 he's exceeded all expectations.

Sadly due to his osteoporosis, he suffers from chronic bone pain but worse, due to hip subluxation, he regularly has to deal with acute and extreme hip pain. Despite his doctors and specialists best efforts and a cocktail of pain relief, so far we have been unable to combat this.

From the 17th to the 22nd July 2015 we have an opportunity to attend a conference set up by the Global Foundation for Peroxisomal Disorders in Nebraska, USA

There we will be supported by world renowned medical professionals at the conference, and Cam will also be seen in a speciality clinic by an endocrinologist who not only specialises in osteoporosis in children, but in children with Cam's extremely rare disease. We are hoping they can help him with all the things that come with age and PBD at the Children's Hospital & Medical Centre in Omaha, Nebraska. 

As well as this we will also have the opportunity to meet and network with other families faced with the same devastating disorder.

Our biggest hope is that Cam can benefit from the conference on multiple levels, however another conference like this won't be happening for at least two years. Given Cam's osteoporosis, hip and the progression of his disease, we have no idea if he'd be able to make the trip in two years. Therefore this could be his last chance to attend.

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