The mission of The B.L.A.I.R. Connection stems from my experience of having a sibling with a terminal illness. When my sister, Blair, was six years old, she was diagnosed with Sanfilippo Syndrome. This is a rare, genetic disorder with a life expectancy in the teens.
Blair (right) & me in 2007.
I was four years old at the time of Blair’s diagnosis, and as I got older, I began to understand the terrifying fate of my only sibling. Knowing our time with Blair would be limited, my family tried to make as many memories with her as possible, and give her the best life that we could. One of my favorite things to do with Blair was jump on our trampoline. She seemed to never get worn out as she jumped and laughed while holding my hand. I also loved sitting on the couch and watching Blair’s favorite show, Barney, with her. It was incredible to see her face light up every time the theme song started playing.
Slowly, it became more difficult for Blair to do all of these things. At the age of twelve, she had lost the ability to walk without assistance and her speaking abilities were very limited. Yet one thing that this disease never took away from Blair, was her positive attitude. She was always known for her contagious laugh and her smile that lit up the room. Through doctor’s appointments, surgeries, physical therapy, and more… Blair continued to smile. This inspired us to do the same, and for the remainder of Blair’s life, we did our best to keep smiling.
Blair & me in 2016.
On April 4th, 2017, Blair passed away at the age of fifteen. As expected, we were flooded with messages of kindness and support. Those that helped me the most were the messages from siblings who understood exactly what I was going through. Most kids are not as fortunate as I was to have access to resources that allowed me to communicate with other siblings of terminally ill children. I started The B.L.A.I.R. Connection in July of 2017 with the goal of giving every sibling of a terminally ill child a support system of people their age that truly understand what they are going through.
Because though every child with a terminal illness is Brave, Loving, Amazing, Inspiring, and Relentless (B.L.A.I.R.), so are their siblings.
Grey Chapin, Founder