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September 20, 2015 10:00 AM
Meckenzie has Sanfilippo Syndrome. Without a treatment, she will not live to adulthood. You can help save children like Meckenzie by contributing to our campaign to raise funds for research in to this condition. Learn more about this campaign

Roger Purdie Hope for Meckenzie - Munda Biddi MTB Trail ride

   
I was lined up against one of those height boards you see in prison and had my mug shot taken !!

It was Shauns 30th birthday party in Johannesburg. He and his lovely wife, Joanne, had put on an amazing spread (South Africans are very much like Aussies in their ability to over cater) and welcomed me into their home. One of the party gags was to have a mug shot taken for later incriminating evidence.

I first met Shaun and Joanne before they, me or any of us would have heard of Sanfilippo.

Sanfilippo is a rare genetic condition that causes fatal brain damage. It is referred to as a childhood disease because most patients never reach adulthood.

I remember the laughs we had in teaching me some of the more 'colorful' Afrikaans language that night at Shaun's 30th. I cannot begin to imagine the thoughts or words that would have come to Shaun and Joanne when Meckenzie was first diagnosed with Sanfilippo Syndrome.

Taking on the Munda Biddi ride gives me the opportunity to bring some attention and hopefully raise some funds for this rare disorder.

I will put posts up when I start the ride and you will be able to follow myself and #Gemmithegiraffe as we take on this remote part of the Australian wilderness by bike.

Please support the Oelofsen's and research into Sanfilippo by donating.

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