Who would have thought of all places I found HOPE? After much Google time, I decided to query Facebook. There, I found the Cystinosis Research Foundation. The founders are parents who have a beautiful daughter, by the name Natalie, who also has the disease. Cystinosis is an "orphan disease", which means that it is so rare that it lacks funding for research to treat and/or cure the disease. I am sure that Natalie's parents had felt, and probably still do feel as I do right now. I cannot sit idly by and watch this disease overtake my daughter. I will fight for her, and willing to fight for every child who has been diagnosed.
I encourage everyone to "Like" the Cystinosis Research Foundation on Facebook. The more awareness the better. I recall reading an article recently that in some countries children may be misdiagnosed and suffer from it simply due to lack of knowledge in the medical community.
If you would like to learn more about Cystinosis and perhaps even donate toward their research for a cure, you may also visit their site: http://www.cystinosisresearch.org/
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