Cure Sanfilippo Foundation Q&A
Recently, I had the opportunity to be interviewed by the President of the Cure Sanfilippo Foundation, Glenn O’Neill. The foundation raises funds to find a cure for the illness that my sister had. This article is very well written and I’m so thankful for the platform they’ve given me to raise awareness for siblings’ challenges. Read the full article on their website.
A terminal diagnosis for a child upends the lives of the entire family. Often, people’s thoughts, sympathies, and prayers go to the child facing a shortened life and the parents left wrestling fate. But there’s another person(s) who is deeply impacted, one whose life is never the same: the sibling.
The care – doctors visits, therapies, treatment regimes, etc. – required for a terminally-ill child creates a vacuum of time, resources, attention, and capacity in a family. Yet, the siblings rise beyond expectations. They become more mature than their years should require, caretakers for their brother or sister, know medical details of diseases and treatments better than most. And yet, they’re still children. Children carrying more than their fair share, but with intense grace, compassion, and love. They understand putting others first, sacrifice, selflessness, and the shortness of time. While often outside the spotlight, these siblings inspire everyone they meet.
One such exceptional sibling is Grey Chapin, 15, whose sister Blair passed away from Sanfilippo Syndrome in 2017 at the same age. She’s been in the “family businesses” of fundraising for research to cure Sanfilippo Syndrome since she was 6-years-old with her annual purple lemonade stand, which has raised more than $150,000 to date and is available as a kit for other families to host. Following Blair’s passing, Grey realized how integral her support network had been in helping her through Blair’s life and death. However, she found that there is a lack of emotional support resources for siblings of terminally-ill children, so she decided to create one.
Launched in spring 2018, The B.L.A.I.R. Connection is a place for siblings to connect with others as they experience the challenges of having a terminally-ill brother or sister. Because though every child with a terminal illness is Brave, Loving, Amazing, Inspiring, and Relentless (B.L.A.I.R.), so are their siblings. The site already features nearly 30 posts from 11 siblings, and Grey recently added a “Be Positive” Collection to emphasize the positive aspects of a child’s relationship with their terminally-ill sibling. And has plans for continuing to expand the site’s functionality.
In March, Grey presented The B.L.A.I.R. Connection at the state competition of the Future Problem Solving Program in the “community problem-solving” individual division and won first place. She moves on to the international competition later this year.
Cure Sanfilippo Foundation had the chance to speak with Grey about her story and this new collection. Check out the Q&A with Cure Sanfilippo President Glenn O’Neill and Grey.