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.
Tell us about yourself.
I am from Orlando, Florida. I’m a freshman in high school. I’m 15-years-old, and I really enjoy playing lacrosse and soccer. I play for my school team for both. And I love going to the beach, and I love playing with my two poodles, Henry and Hudson.
Tell us a bit about your sister Blair.
Blair was diagnosed with Sanfilippo Syndrome when she was 6-years-old. I was four at the time. Even as Sanfilippo took away her ability to do a lot of things, her huge personality always shone through. She was the sassiest person I’ve ever met. She’s hilarious. And she had, a smile that — I don’t know, everyone says this — but literally lit up a room. She loved jumping on our trampoline. She loved going to the beach. She liked holidays when the whole family would come over and it would be loud, and she loved watching Barney and all of her other shows and just being with us.
What are your earliest memories of Blair?
I definitely remember [the period] when she was saying words. I’m not sure if I completely remember when she was saying full sentences. I definitely remember that running around and wrestling and those kinds of things. We had this hallway in our old house all the way around the house and we would just run and chase each other around that. And I remember singing songs to her and having her, like finish the lyric.
You and your family have been advocating for research for Sanfilippo for a long time. Can you talk about some of that and your involvement?
My Dad started “Sing for Blair” five years ago or something like that. He started a GoFundMe and it got a lot of media coverage and a lot of celebrities sang for Blair. We got a lot of support from singers and artists and friends, which was really cool.
One of Blair’s old friends from preschool, Luke McMahon, started the “I Won’t Let Go” campaign where he actually wrote a song for Blair and made a music video to raise money for research.
The fundraiser that I’ve been most involved in is called Purple Lemonade. When I was six, my kindergarten class did a lemonade stand to save the manatees. If people would donate to save the manatees, then I could do something similar to raise money for Blair. So, that year we had our first purple lemonade stand, with purple representing courage. We started out very small that year, but we’ve had it annually ever since. Right now, I think we’ve raised over $150,000.
Tell us how and why The B.L.A.I.R. Connection got started. Where did this idea come from?
Blair passed away in April 2017 and, that July, I came up with the idea to start a sibling-support website. I, especially after she passed away, realized how grateful I was for the support system that I had throughout her life. We got to meet a lot of Sanfilippo families and I got to interact with a lot of siblings, but most siblings with a terminally-ill brothers or sisters don’t. My mom showed me the Courageous Parents Network, which is a support website for parents of kids with a terminal illness. I researched it and found there was nothing like this for siblings.
Is The B.L.A.I.R. Connection open to all siblings of children who have been diagnosed with any type of terminal illness?
Yes. The goal of the website is to help any sibling who has a brother or sister living with a terminal illness, just survived a terminal illness, or passed away from one.
Having something somewhere that people can at least read about other people’s experiences is one of the most powerful things. How has the response been so far to get submissions?
The site started in May 2018 – so not even a year yet – and about 11 siblings have written blogs, and some of them have written multiple ones.
I didn’t really have an expectation when I first started. I didn’t know how difficult it was going to be to try to get on a consistent upload schedule when, sometimes, people are taking a little bit longer to write a blog, or I can’t think of blog ideas, or I just can’t find a sibling that wants to write a blog. But the response has been pretty good.
The contacts in hospitals that I’ve made have confirmed the lack of sibling support. They’ve told me that they’re grateful to have a resource recommended for siblings. People recognizing that there’s a need for this resource in the terminal illness community has been really cool.
How did the idea for the new “Be Positive” collection come about?
I definitely understand the challenge of sitting down and writing a blog without any prompts, without any questions. So, I started a new sort of section of the website called “Collections” and each collection would go into a different topic.
I was hoping to make each topic sort of lighthearted. That’s why I started with this, the Be Positive Collection because it asks questions like, “What’s your favorite memory with your sibling? What’s your favorite activity to do with them?” This collection emphasizes the positive aspects of having a sibling with a terminal illness because sometimes it’s hard to find that.
It’s also helpful too; siblings want to contribute to the website, but don’t have time to sit down and write a blog or don’t know what they would write a blog about.
What are your plans for growing The B.L.A.I.R. Connection?
When I had the idea for the website, I wanted it to be more of a social-media type format [with the ability for siblings to directly connect with each other]. As I talked with the website designer and other people, I realized that that wasn’t very realistic. But it’s called “B.L.A.I.R. Connection” because part of the goal is to connect siblings and right now the website isn’t really accomplishing that because it’s posting blogs and they’re connecting [only] by reading each other’s blogs. They’re not actually being able to talk to each other or share experiences just with one another. That’s definitely a goal for the future, whether it’s a forum or some type of other way to connect.
The website has gotten a lot of traction, but I really want to focus on getting it honed to sibling viewers because that’s who it’s for. Then in the future, like way in the future, my goal is for a lot of hospitals and grieving centers and therapist to know about the website and to recommend it to siblings, too.
What’s this experience been like for you personally? How has it been seeing these other family stories that aren’t very different than what you’ve been through?
It’s more work than I thought it was going to be when I think back on it. I’ve spent so many hours working on this website, getting the website up, [and] e-mailing siblings, but it didn’t feel like work because I really have enjoyed it. It’s really rewarding.
Getting e-mails from parents who are on the website and saw it on Facebook and they say, “wow, this is really cool; My daughter could use this, I’m going to send it to her.” Getting those little messages or just putting up a blog at the end of the week has been really rewarding and made it all more than worth it.
It’s interesting to hear about other terminal illnesses because it’s so much different for Sanfilippo siblings compared to a cancer sibling. So, they might have a normal, pretty normal relationship with their sibling who has cancer because they haven’t had cancer all their life. My sister passed away from Sanfilippo and a sibling whose sister had cancer passed away; we can have a lot in common because, you know, we both have that grief in common. But it’s just an interesting to learn about how those experiences can be so different, yet similar also.
For those who read this, what would you like them to know about / call to action?
My only goal is just to help other siblings in whatever way the website could help them. I want them to use it that way. You, as a sibling, just to click on the link, read the blogs as they go out, or e-mail me to submit a blog, a photo, a drawing, a poem, or whatever it might be.
It will be really helpful to get the word out, too.
I really want to focus on getting it out to larger audiences and specific groups in need of something like this.
UPDATE – JUNE 2019
In June, Grey won first prize in the international competition for Future Problem Solving Program International in the Community Problem Solving category for The B.L.A.I.R. Connection.
Congratulations to Grey on this significant accomplishment.