I am really excited to be sharing this blog post with you today. Today is Cystinosis Sunglasses Day, a day to raise awareness about the very rare genetic disease Cystinosis. After a long 2 years of doctor hopping, inconclusive tests and frustration, our dear friends Katelyn and Adam learned that her son, Alan, was born with this genetic condition and that their life would forever be changed.
Cystinosis is characterized by a build up of the amino acid cystine in the body, which can cause all sorts of health concerns, most notably kidney and vision problems. Many people with cystinosis wear sunglasses the majority of the time due to the increased sensitivity of their eyes. At this point, there is no cure for cystinosis.
In order to function and grow, Alan must take medication every 6 hours in order to keep the cystine levels in his body at a manageable level, adding up to a whopping 23 doses a day. That is every 6 hours for the rest of his life. No exceptions. On top of that, he must receive 6 sets of eye drops throughout the day to help clear the cystine. Due to the disease, as well as going 2 years without a diagnosis, Alan will grow at a much slower pace than others.
Although Alan has cystinosis, he is so much more than his diagnosis. He is one of the smartest kids I know, impressing me with his language skills every time I see him, and showing me on the map where all of his family members live. He is creative and imaginative, making breakfast out of dirt and rocks in his play set. He can dance like no other. And my God, he is strong.
Last summer, Katelyn asked me to document an hour or two of their day as she was writing a piece for a magazine and wanted to include images that reflected Alan and his big spirit. In honour of Cystinosis Sunglasses Day today, I am sharing a little glimpse at our morning together in the hope that this might raise a little more awareness about cystinosis and to shine a light on this amazing, strong family. Katelyn and Adam, you are both such amazing supportive parents to Alan, and he couldn’t be in better hands. And seeing how Alan has blessed my friend and made her this courageous and fierce mother makes me so happy.
If you want to learn a little more about Cystinosis visit the Cystinosis Research Foundation. If you are local to Ontario, and want to donate to or get involved with this cause, check out the Liv-A-Little Foundation and read Olivia’s story. Even if you are unable to donate, please help raise awareness today by snapping a selfie of yourself and/or your kids and post it to the Cystinosis Sunglasses Day Facebook Page and use the hashtag #cystinosissunglassesday on social media.