Five year old Olivia Little Port Elgin is one of just 75 children in Canada with Cystinosis, a rare disease that afflicts children and young adults.
What happens when you have Cystinosis? An abnormal build-up of the amino acid called cystine occurs in the cells eventually destroying all major organs of the body, including the kidneys, liver, muscles, white blood cells, eyes, and central nervous system.
Sadly, at this time, there is no cure, only a time demanding, around the clock treatment. CystagonTM, the drug which has a very bad taste and smell, helps break down the build-up of the cysteine and protect the organs. Olivia must take this every six hours, every day for life. She also receives eye-drops every hour while awake to remove the cystine crystals from her corneas.
This is a treatment, not a cure. Without this specific treatment, these children progress to end-stage renal failure by an average age of nine years. In the past, this meant death. Today these patients can receive renal dialysis or transplantation, but even with successful transplantations, they develop abnormalities in other organs.
Because of the extreme rarity of the disease, financial aid from government and pharmaceutical companies towards research is non-existent.
Carey Optical, along with Hoya Canada thank all customers who purchased glasses in September. As a result, $1,500 has been raised and donated to the Liv-A-Little Foundation.
Every penny donated to this Foundation goes directly to research. We are getting closer to finding a cure and ensuring Olivia, along with others with Cystinosis, get to live a long and healthy life.
For more information or to donate directly to the Liv-A-Little Foundation and help find a cure, please visit their website.
