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

2019 Premier Veterinarians

The 2019 Central Florida List is OUT! Each year Orlando Magazine publishes the Premier Veterinarians List. Take a look at the full list now.

2018 Premier Doctors

Our annual list of over 500 doctors.

Premier Realtors 2019

Let Orlando's best realtors help you find your dream home!

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.
Edit ModuleShow Tags Edit ModuleShow Tags

MoreRecent Blog Posts

Health Hub: Why Are Flu Shots Important?

Fall has arrived, and with it, the start of flu season. While you can get the flu at any time, cases typically rise in October and hit their peak around the holidays. Learn why it's important to get your flu shot!

Special Olympics Florida Celebrates Its Annual Champions Gala

This annual exclusive event honors community leaders and fundraises for statewide athletics!

Taste! Central Florida Giveaway

We've partnered with Taste! Central Florida for their 30th Anniversary to give 3 lucky couples two tickets to this amazing annual event!

Health Hub: Robotic-Assisted Spine Surgery

When back pain is almost as common as a cold, feel confident in finding the right option for you!

Health Hub: Choosing The Right Pediatrician

Take these steps to feel confident about your decision.
Edit Module