The B.L.A.I.R. Connection is a support website for siblings of terminally ill children. I started this website in April of 2018, but it had already been in the making for almost a year.
In the months after my sister passed away, I realized how lucky I was to have such a great support system. Family, friends, Blair’s caretakers, and classmates all helped me through not only the past year but ever since Blair was diagnosed. I always had someone to talk to if I needed it, but it helps even more to talk to someone who understands. I met several other siblings throughout Blair’s life and that was one of my favorite things. We even traveled several times to meet other Sanfilippo families who we had only known over social media for years. Yet I know that most siblings do not have the opportunity to meet others who are going through similar challenges. There were no support websites for siblings of children with terminal illnesses. Inspired by a parent support website, Courageous Parents Network, I thought of the idea to start a sibling support website in the summer of 2017. I had recently competed in the international competition for my school’s Future Problem Solving program.
Future Problem Solvers
In fourth grade, I started participating in Future Problem Solvers, an after-school program that teaches critical and creative thinking, problem-solving, and decision making. The component that I competed in for four years is called Global Issues Problem Solving; which includes reading a futuristic scenario, identifying problems, and coming up with a solution. I reached the state competition a few times, and in 7th grade (about two months after Blair passed away) I had the opportunity to go to the international competition in Wisconsin. This was a really cool experience that inspired me to compete in a different component of Future Problem Solvers called Community Problem Solving. I knew that I wanted to make my project in honor of Blair. I also wanted to give back to the community that had helped my family through that past year, whether it be the Sanfilippo community or Orlando hospitals. Ultimately I came up with the idea to start a sibling support website.
I was immediately passionate about this project. Just a week after coming up with the idea, I met with my Future Problem Solving teacher (in summer! crazy, I know). She loved the idea and was sure that the judges at the next FPS competition would too. As soon as I was given that “okay” to move forward, I got started. I emailed my neighbor, who owns a tech marketing company (Launch That), and asked if we could meet to discuss my idea and if his company could help make the website/logo. I shared it with family and friends, hoping they could help me come up with a name.
It took a few weeks, but we finally came up with an amazing name for the website. The B.L.A.I.R. Connection. In honor of my sister, Blair, this name fits perfectly. B.L.A.I.R. stands for Brave, Loving, Amazing, Inspiring, and Relentless. These words describe a terminally ill child, yet they also describe their sibling. Siblings can often be overlooked, which I realized more and more as I researched for this project. The word “connection” simply represents one of the main goals of this website. To connect siblings. Since I announced The B.L.A.I.R. Connection and started reaching out to siblings, I have made connections with so many inspiring “super sibs”. I have not only gotten to interact with siblings but also medical and fundraising professionals who have helped give me feedback.
September 2017 – April 2018
Throughout these several months, I met with Launch That several times as they started to design the website and logo. In addition, I had multiple calls with those I thought could provide knowledgeable feedback to assist me in making this website as helpful to siblings as possible. I began to reach out to siblings asking if they wanted to write blogs, and I started writing many blogs myself.
In April of 2018, the website and logo were both complete. I announced The B.L.A.I.R. Connection on social media and immediately got positive feedback. This just made me want to continue building the website. Over the summer, I wrote more blogs and came up with more ideas to improve the website.
Now that school has started (along with Future Problem Solvers), I am mainly focused on completing proposals and other requirements for the FPS State Competition. I also want to continue to reach out to siblings and hospitals around Orlando. I recently attended the Conference of Child Life Professionals, where I spread the word about my website to health professionals. Many of them thought this would be a valuable resource. In the future, I hope to reach out to more siblings who find The B.L.A.I.R. Connection beneficial.
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More