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Venue : The Atrium Conference Centre, Mandurah City, Western Australia.

On the 9th and 10th September, myself and my step son Marcus Graham (15) were able to attend a conference on "Cystinosis", a Lysosomal Storage Disorder of which Marcus suffers from.

The conference was held in Western Australia, and had a leading Australian "Cystinosis" Specialist doctor there, as well as pre recorded presentations from American and British leading "Cystinosis" Specialists.

Nearly 40 Cystinosis patients attended the conference from around the world, along with friends and family of the patients.

My hope for Marcus attending, was that he would "come out of his shell", and realise that there is no need to hide away or be ashamed of who you are and what you‘ve got, just deal the best you can with it.

My aim for me attending, was to research what the rest of the world was accessing medicine wise, knowing already that several countries had higher strength medicines available to them than what our country was prepared to issue us, to learn more specific’s of the disease, and from Marcus’ obvious symptom’s - which avenue to take next!!

The conference was great… I felt like a sponge soaking up all that information at once.

Presentations were easily understood, and what wasn’t, was well explained at question and answer time. I now have answers for so many of my own questions, even questions I hadn’t thought of yet!! I now understand the disease more clearly, and have since found day to day living becoming easier, due to understanding neurological limitations imposed by "Cystinosis".

Marcus, while there, met a 24 year old lady with "Cystinosis" that had been in the Olympics, and found her stories amazing, coming away with a few dreams of his own. Excellent!!! I relished being with other parents and swapping experiences, learning of future un-researched complications with the disease, and what physical symptoms to be constantly observing Marcus for… I also found it sad to hear of so many children that have passed away through mis-diagnosis, and lack of awareness of this disease.

This conference has changed our lives, Marcus as an individual, and us as a family.

Marcus is now realising that having a rare disorder is no excuse to "not live!!", and as parents we have become more aware of Marcus medical needs in the immediate and distant future.

I would like to extend a huge amount of thanks to the LDNZ for their generous donation, and the Lottery Ministers fund, also for their generous donations for the LDNZ and it‘s members. Without generosity such as we were shown, we could not of attended, and Marcus may have spent his whole life not meeting any one else like him, and not realizing his full potential in spite of this terminal illness. Thanks again to every one who helped us attend. We will be forever grateful…

Kindest Regards

Emma Graham

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