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.



Grey Chapin (left) and sister Blair, shown in late 2016. Grey saw her sister as “brave, loving, amazing, inspiring and relentless.”

Roberto Gonzalez

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

Add your comment:
Edit Module Edit ModuleShow Tags
Edit ModuleShow TagsEdit ModuleShow Tags

Guides & Resources

Retirement Living 2019

This feature highlights several great retirement communities that Central Florida has to offer.

Orlando's Best Lawyers 2019

Our annual list includes hundreds of Orlando-area attorneys in dozens of areas of practice.

Orlando's Top Dentists of 2019

Our annual list featuring 220 of the area's finest dental professionals.

Guide to Private Schools 2019

Our searchable annual database will help you chart an educational course for your family.

Top Doctors 2018

The Annual List of the Top Doctors in Orlando.

Best Doctors 2018

The Annual List of the Best Doctors in Orlando.

Orlando's Top Chiropractors of 2018

Check out our 2018 list of some of the best chiropractors in the Orlando area.
Edit ModuleShow Tags Edit ModuleShow Tags

MoreRecent Blog Posts

Escape To St. Augustine's Newest Oceanfront Resort

We discovered a true gem off of Florida's Atlantic Coast. Come along with us as we explore the brand new Embassy Suites St. Augustine Beach Oceanfront Resort.

An Easier Way to Buy & Sell A Home

Since 2017, Opendoor has been shaking up the residential real estate market in Central Florida, putting more power than ever into buyers’ and sellers’ hands.

Ultimate Game of Thrones Experience Giveaway

Win the Ultimate Game of Thrones Experience for you and 4 of your friends! Enter through May 15.

Future Tense

The latest Savor Orlando blog post has some good news about coming attractions, grim news about planet Earth.

Guiding Lights

The Indigo Girls inspired "music nerd girl'' Becky Warren. Now the singer-songwriter is opening for them.
Edit Module