Tonight the cystinosis community is paying tribute to three young adults who passed away this past week with a worldwide candle lighting ceremony. We’ve only been a part of this community for about two years but more losses have been felt than I expected for such a rare disease.
Although I have not known any of these families personally their loss has been deeply felt. As much as we try to keep hope first in our hearts, the reality is Elsie’s future is unknown. Cystinosis affects everyone so differently despite best efforts or little effort.
Families and friends work hard every day to raise awareness and fundraise to give those with cystinosis the future they deserve. Better treatments and a cure are on the horizon but financial support is needed. Every little bit counts and everyone in the cystinosis community extends their love to those that help them fight this disease. If you would like to give please go to www.cystinosis.ca/give.
Our hearts go out to all families who have lost their loved ones to sickness and disease.
Elsinosis: Living with Cystinosis 