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Support from fellow siblings of children with Sanfilippo and other disorders

August 3, 2020
Blair and Grey Chapin

Grey Chapin has carried a heavy load in her young life. Her older sister Blair died of Sanfilippo Syndrome, a terminal neurodegenerative genetic disorder, at 15-years-old in 2017 when Grey was in middle school. Grey chooses to honors her sister by helping other siblings of terminally-ill children with The B.L.A.I.R. Connection.

A realization that turned into action

When Blair passed away, what helped Grey the most during that tremendously difficult time “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,” reflected Grey.

The B.L.A.I.R. Connection logo

She started the The B.L.A.I.R. Connection in July 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.”

“Every child with a terminal illness is Brave, Loving, Amazing, Inspiring, and Relentless (B.L.A.I.R.). So are their siblings,” says Grey.

A outlet and shoulder to lean on

Siblings can read blog posts from other brothers and sisters, connect to the The B.L.A.I.R. Connection podcast, browse photo wall, sign up for the newsletter, and find The B.L.A.I.R. Connection on social media. They are also welcome to submit a blog for the site.

“It’s unfathomable what the ‘healthy’ siblings of children with Sanfilippo Syndrome go through. It’s different than adults in many ways. It’s also heartbreaking in many different ways,” said Glenn O’Neill, father of Eliza (MPS IIIA) and Beckham and President of Cure Sanfilippo Foundation after reading Gray’s July 2020 ” Don’t Let Me Go” post.

“The honesty and courage [of Grey and the other siblings] to share these real life fears and feelings is so powerful,” said the parents of Carter Sarkar (MPS IIIA) via their family social media account Carter’s Challenge.

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