This month, I started cysteamine, the special medicine that Mommy and Daddy give me every six hours. They even have to wake me up in the middle of the night to take it! The medicine tastes and smells really yucky, but Mommy tells me it's really good for me, so I take it in stride. Mommy calls me her "little trooper".
While I still have to take a bunch of other medicine throughout the day, this new medicine is saving my life, and without it, my kidneys will get really bad, and so will the other parts of my body. While the cysteamine won't fix me, it will slow the progress of my disease, and help me live a better life. Daddy told me I can't miss even one dose!
Mommy and Daddy have made really good friends since my diagnosis, with parents of other kids just like me. They all tell Mommy and Daddy that it will get easier, and it already has. I am doing really well on my medicine, I'm getting used to the taste and sometimes don't even need to wash the taste out of my mouth with juice! Mommy and Daddy feel connected to the other cystinosis families, and have been able to lean on them for support and advice, which has made all the difference. And I'm super excited to meet all my new friends who are just like me!
All the donations you make to me through this website or at one of the fundraisers Mommy and Daddy are organizing, go directly to the Cystinosis Research Foundation (CRF). CRF is the wonderful organization that donates all funds to research my disease. This research is close to finding better medicine for me. Even more exciting is that CRF scientists are close to finding a CURE for me!! That's right, I might not have to take the medicine at all in the future. That's why it's so important for you all to support me and all our new friends by making a donation. Every dollar puts me one step closer to being a healthy kiddo with no more medicine needs - YEAH!