Imagine being handed a slip of paper with the math problem: 2+2=? Pretty simple, right? Most people would get the answer correctly. How about a word problem where two trains are travelling towards each other at different speeds, and the question is where do they meet and who travels further? Again, given the information, you and possibly a helper can probably figure it out.
Now imagine a math problem so complex that it takes 8 years to complete. And, in the span of time you and others are attempting to figure out this math problem, a person close to you is suffering. This person can be a child who is losing their teeth without explanation. Or a young boy who breaks his leg simply by getting out of bed. Or a teenager who has cyclical fevers that come and go with no prior warning signs, and when they leave there are no physical or mental defects. Imagine a math problem so advanced that is given to the top mathemeticians in the US and they cannot figure it out. Wouldn’t that be a frustrating set of circumstances?
Welcome to the world of Rare Disease. I recently met up with Patricia Weltin who is the executive director and founder of Rare Disease United Foundation. She spearheads awareness and funding for the Rare Disease community here in RI and her operation is based in Rumford. She presented me with an amazing booklet which I’m recommending you download and see for your own eyes. It contains children with rare diseases being painted by artists in a variety of mediums. Sarah Tallarico from the Wickford Art Association was a critical contributor to this project, as she helped organize the artists to carry out this incredible project.
To see this booklet and to find out more about Rare Disease United Foundation, go to www.rarediseaseunited.org.
The following video is about one of the children in the booklet, Jayson.