A New Partnership
Patient Worthy is honored and excited to announce our new partnership with The B.L.A.I.R. Connection.
The B.L.A.I.R. Connection was founded by Grey Chapin who knows firsthand what it’s like to have a sibling with a rare disease. She explains that not only is every child diagnosed with a terminal condition Brave, Loving, Amazing, Inspiring, and Relentless, but so are their siblings. The B.L.A.I.R. Connection provides siblings of those living with life limiting conditions a forum to share their own stories.
We are excited to work together to get the word out about this resource and help connect more individuals to others on a similar journey.
Grey’s Story
The B.L.A.I.R. Connection was named for Grey’s own sister who was diagnosed with Sanfilippo syndrome when she was only six years old. Grey explains that when you grow up with a sibling whom you know has a shortened life expectancy, you revel in every moment with them.
She says her sister was known for her positivity despite her prognosis. She loved seeing her smile as they played together on the trampoline or cuddled together on the couch watching Blair’s favorite show.
When she passed away in 2017, it was still undeniably hard for the Chapin family. Grey says that having other people to talk to who also had a sibling with a terminally ill condition is what helped her the most.
Expressions of condolences and support are always heartwarming, but it is different to talk to people who understand exactly what you’re going through. Seeing firsthand the benefit of this communication, Grey established The B.L.A.I.R. Connection. This website aims to provide every sibling of a terminally ill child the type of support that can only come from other children in the same position.
Be sure to check out the resources on The B.L.A.I.R. Connection website, browse their Photo Wall, and read some of their sibling stories.
