That “good cause” is to raise money for Sanfilippo syndrome research. Grey’s older sister, Blair, has the genetic disorder. Trying to find a cure, or even a way to slow it down, is a cause that is near and dear to Grey’s heart.
Sanfilippo syndrome is a genetic error of metabolism. The complex explanation of the disease can be found on the Chapin family’s web site, theblairbanner.com, but what it basically means is that the 11-year-old is missing an essential enzyme that breaks down strings of a complex body sugar called heparan sulfate. The partially-broken down sugar, or mucopolysaccharide, accumulates in the brain and the body’s cells and tissue, causing progressive damage. The storage process affect’s appearance, body function and development.
Sanfilippo is a progressive disorder. Blair’s parents, Roger and Susan, have videos of Blair when she was 5 and 6 years old singing her ABC’s. She has since become non-communicative. As this disease progresses, Blair will continue to degenerate and will eventually become non-ambulatory.
The current life expectancy for a child with Sanfilippo Syndrome is 10-20 years.View More images >>
Blair also suffers from eosynophillic esophogitis or EE. While there is no cure, EE can be managed with a strict diet. For Blair, that means eating only two foods.
There are doctors who are close to finding ways to stop the disease, but funding is still direly needed. Sanfilippo is considered an “orphan” disease, so it isn’t a top priority on any major drug company’s research list. All funding to research this disorder comes from private donors.
That’s why you can find Grey frequently manning a lemonade stand. Every little bit helps, after all.
After Blair’s diagnosis with Sanfilippo, Roger and Susan have counted every day as a gift.
“We have continued to see positive progress in the field of research, however, it is slow,” Susan said. “There are a few clinical trials that are right around the corner ... hopefully! One is for enzyme replacement therapy and is sponsored by Shire Pharmaceuticals. The other is a gene therapy trial as part of a research study that we have been helping fund through the Sanfilippo Research Foundation.This is the foundation we will be supporting with the lemonade stand in Boca Grande.”
“Blair has continued to regress. She no longer speaks and is now at a level of about an 11 month old. While that is difficult to see, we are thankful that Blair has been very healthy and happy. She still loves coming to her home away from home, Boca Grande!”
For more information, go to facebook.com/purplelemonadestand or to theblairbanner.org.
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