What happens when the siblings of kids with the same terminal illness meet? I can say from experience, it’s awesome. No matter your age or interests, you immediately become best friends.
At this year’s MPS Conference, I had the opportunity to meet several siblings. I didn’t get to hang out with them too much during the conference, so I asked my parents to invite a few families over to our house that week.
Let me introduce you to Samantha, Sophia, & Ella:
Sam is 6 years old and her older brother Will has Sanfilippo Syndrome. I’ve been following her family on social media for a while and she’s even helped with a couple of collections! I was really excited to meet Sam and on a mission to become besties. Let’s just say, I think I succeeded.
During my speech, Sam drew some *amazing* pictures:
Then, we hung out at my house:
We played with my dog:
& we had a lot fun with Instagram filters:
“I liked meeting and playing with the other siblings. It made me happy. It made me happy because my brother has Sanfilippo Syndrome and they know what that is and we all had fun together.”
~ Samantha Byers
Sophia is nine years old and her younger brother Carter has Sanfilippo Syndrome. Her family raised over $1 million to find a cure & Save Carter. Sophia has also helped me with collections and it was so cool to meet her.
Here’s Sophia & Sam at the conference!
“Sophia said her favorite part about meeting the siblings was seeing all of the other MPS/Sanfilippo kids how they react and act towards other people.
In regard to meeting the siblings who do not have Sanfilippo her favorite was knowing that you all had the same questions and concerns. She didn’t feel alone in thinking about things like what would their relationship be like if Carter didn’t have Sanfilippo, seeing and knowing that others worried about when their sibling would decline and if they were sick how they could help them. She found a lot of comfort in that and knowing it’s ok to have these type of questions and concerns because other siblings do too.”
~ Sophia & Carter’s mom
Ella is 12 years old and her brother Jacob has Sanfilippo. She is the sibling closest to my age out of these three and it was cool to have a little more mature conversations and see how my speech impacted her. Ella couldn’t come to my house that day, but we’ve been texting & I think we will continue to be good friends.
I had lots of fun playing with Ella’s brother, Jacob, at my house:
“We met this amazing young woman in person at the MPS Conference. The one and only session Ella wanted to attend was Grey’s. My Bean is a strong 12 year old. She carries a lot every day. But she holds a lot of it in. We don’t talk a lot about Jacob’s disease. It’s just always there in the air. She knows she can come to us when she needs to talk, but 12 and parent talks aren’t so typical, right?
Ella instantly felt connected to Grey. And she openly wept as Grey spoke. It was really hard to see as her mom. Hard to see her hurt like that. And also hard because I openly wept next to her.
I am so grateful for Grey. She has really given Ella and all of the super siblings out there a safe place to share and connect.”
~ Ella & Jacob’s mom
“My first conference was overwhelming and I had to take many breaks. Those feelings come back, but I took advantage of being with the only people that truly can relate to me. Can’t wait till the next one!”
~ Ella Moon
I send out a quarterly newsletter to siblings and parents in the terminal illness community, along with people who just want to keep up with the website. Join now!
My new Tik Tok account got a sneak peek of this blog before it was published! I’m hoping to reach more siblings by posting short & powerful videos and trying to go “viral.” If you’d like to help my viral mission, follow @theblairconnection on Tik Tok!
Super Sibs Podcast
The B.L.A.I.R. Connection is starting a podcast! I will be interviewing all kinds of people to gain all perspectives of sibling support. If you’re in the Orlando area and are interested in being featured on the Super Sibs Podcast, let me know.
If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find something that I can relate to in my own life, and I let the writing guide me to my own ideas. Read More
Now that my sister is gone, photos are one of the main ways I feel that I can connect with her. Whenever I’m missing Blair, I look through old photos and memories. I find it healing to edit photos of us creatively to be symbolic and make it feel new. Here are some of those edits. Read More