The B.L.A.I.R. Connection: A Healing Legacy
Teen who lost older sister to a rare disease creates a sibling support website to help people like her move forward.
In January 2017, then 13-year-old Grey Chapin was featured in Orlando magazine’s Helping Hands issue for her Purple Lemonade Stands that raised money for research into Sanfilippo Syndrome, a progressive neurological disease that took her sister’s life a few months later. But just as her sister’s life inspired Grey, so did her death.
Grey, a freshman at Lake Highland Preparatory School, wanted to offer siblings like her the kind of support she had known. “It was really beneficial to have connections with other siblings of kids who have Sanfilippo because they understood what I was going through a lot more than anyone who hadn’t been through it would,” says Grey.
The name of her website, the B.L.A.I.R. Connection, is an acronym for “brave, loving, amazing, inspiring, relentless,” qualities Grey saw in her 15-year-old sister, Blair. Launched in May 2018, it provides siblings of terminally ill children a place to share photos, blog posts and memories.
Siblings like Grey are known in the Sanfilippo community as “super siblings,” according to her mom, Susan Chapin, because they have achieved “a different level of kindness and maturity.”
Katie Di Illio of Canada is one of the super siblings who has benefited from Grey’s site. Di Illio’s brother, Matthew, lost his life to a rare genetic condition at age 15. “It means a lot for me to provide my insight and just be able to have an outlet to openly speak about Matthew without having to worry about how people might react,” she says.
Despite focusing her free time on her site since Blair’s passing, Grey won’t abandon her fundraising efforts. “Even though the research that the Purple Lemonade Stands funded couldn’t save Blair, I think it’s still really important to continue fund-raising so other families don’t have to go through what we went through.”
Grey’s perseverance has helped her parents press on. “She had her lemonade stand last year without hesitation, even though it would have been the first one without Blair,’’ her mom says. “Those are maybe not decisions we would have made on our own, but they have been really healing.”
Continuing the Mission
The B.L.A.I.R. Connection allows siblings of children with terminal illnesses to share blog posts, photos and memories. Find out more at theblairconnection.org