ORLANDO, Fla., Feb. 12, 2019 /PRNewswire/ -- Grey Chapin, Founder of The B.L.A.I.R Connection website (www.TheBlairConnection.org), recently presented at the 15th Annual WorldSymposium (www.worldsymposia.com) for Lysosomal Disorders. Her website was developed to offer support and interaction for siblings of terminally ill children.
Grey Chapin, 15 years old, was the youngest presenter at the conference that included internationally known doctors, scientists, researches and foundations – all presenting information and sharing the latest discoveries related to lysosomal diseases and the clinical investigation of these advances.
After Grey's sister Blair passed away in April 2017 at the age of 15, Grey realized there was a lack of sibling support for those with terminally ill brothers and sisters. Blair was diagnosed at the age of six with Sanfilippo Syndrome, a rare genetic lysosomal disease.
"Living in Orlando, I was fortunate to meet dozens of siblings of other Sanfilippo kids," said Grey Chapin. "Most of the kids were visiting for their 'Make A Wish' trip, and we always found ways to connect, which often included the entire family."
Through research, Grey found there is very little support for siblings who are coping with the loss of their brother or sister. Compounding the problem is that most healthy siblings don't want to be an added "burden" for their parents who are often physically, emotionally and financially drained taking care of a terminal child and therefore don't seek support.
"I thought that a website, where young people could interact and share their stories of the challenges and feelings around growing up in a household with a dying brother or sister might help," added Grey. "In less than a year, we've had great success with contributing blogs, stories in the press and general awareness such a website exists for support."
Grey Chapin lives in Orlando with her mom and dad, Susan and Roger Chapin. She is a freshman at Lake Highland Preparatory School. For more information on The B.L.A.I.R Connection or to contact Grey Chapin, visit www.TheBlairConnection.org.
SOURCE The B.L.A.I.R Connection