Hi. I’m Grey, more commonly known as Blair’s sister. I was four years old when my older sister was diagnosed with a terminal illness called Sanfilippo Syndrome. The day that Blair was diagnosed marked a new beginning, a new “normal” for my family. I don’t think my parents ever sat me down to tell me that Blair had Sanfilippo, that’s just how it always was. I don’t remember anything different. I slowly switched roles with Blair, becoming the “older sibling”. My goals were to love her, protect her, and most importantly… make her as happy as possible. As my parents tried to figure out which school was a good fit for Blair during her “hyper phase”, I started at Lake Highland. I made some of my best friends during my first couple of years at LHP. If I were to ask them to describe finding out about Blair’s illness, they would describe it the same way I did. They feel like they have always known, they don’t remember it any other way. I couldn’t have chosen a better group of friends to support me during Blair’s life. They helped fundraise and loved on B as much as possible.
When I was 10, my sister stopped going to school. Her days consisted of music therapy, physical therapy, doctor appointments, and lots of Barney. Through these changes, I continued to focus on my goals as her sister. Love her while she was still with us, protect her from the world, and make her happy on her toughest days. As Blair lost more and more abilities, babysitters were at my house to help take care of her more often. Goal #2 – Protect. I watched every girl that walked through the door to take care of B like a hawk. Did you give her the 3:00 meds? She would be more comfortable in this position. She watched that Barney episode yesterday. You have to skip the parts that have Riff the Dinosaur in them. She doesn’t like him, which means you don’t either. Don’t wear a necklace, she will pull it right off. If you were one of Blair’s caretakers and you got MY approval, that is definitely one of the biggest accomplishments of your life. Those who did pass the test became not only one of the best things that could ever happen to Blair, but also to me. I consider most of Blair’s caretakers my best friends. Even today, though B isn’t alive anymore, I hang out with them as much as I can. They are some of the only people that I can joke around with about Blair. Remembering embarrassing moments, her sassy attitude, and more is one of the most amazing connections to have with all of these girls.
The end of Blair’s life was hard. In January of 2017, Blair had surgery. She was luckier than most Sanfilippo kids when it comes to health throughout her life. She was rarely in the hospital, and didn’t face many health problems outside of the symptoms of Sanfilippo. This made the experience of her surgery much more scary for me. Though Blair’s surgery went well, her health continued to decline. She was in bed a lot, and wasn’t able to engage in as many activities as before. In March, hospice nurses started coming to the house. My parents told me that she only had a few weeks left to live. In those last few weeks, I spent as much time with Blair as I could. I looked through old photos for days as I sat next to her bed, holding her hand tight. I remembered the birthday parties, water slides, first days of school, bike rides, vacations, and so much more. I looked back at these memories and thought of how grateful I am to have had such an incredible sister. I am so proud of every obstacle she overcame, every smile she put on her face, and every milestone she reached. I am proud that she inspired so many people. I am proud to be called Blair’s sister.
I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. Read More