When Annabelle’s mom noticed a small hump in her back as a baby, the family had never heard of MPS IVA. Since, they have become a pillar of the MPS community, raising money for research, leading national advocacy groups and providing support to others.
Q: Tell us a little bit about you and your family.
My name is Annabelle, oldest sister of three, and I attend Langley High School as a sophomore. I live in McLean, Virginia, with my mom, dad and two sisters, Madeline and Charlotte. And my two dog sisters, Wellsie and Birdie. Birdie is my best friend dog that I have been training to be my “service” dog. We have a ways to go but she has learned a ton already.
Q: What is the one thing you want others to know about living with MPS IVA.
I can make the best “short” jokes! Sometimes, I wish others didn’t see me so differently, making it really awkward at times. Overall, I am a happy person and because of MPS IVA, I have had unique experiences offering different perspective on life. I have specific challenges that make life more complicated, but where there is a will, there is a way. It is frustrating at times though and every little bit counts when others offer help here and there. But overall, I do like to do things and feel independent with a purpose.
“Overall, I am a happy person and because of MPS IVA, I have had unique experiences offering different perspective on life. I have specific challenges that make life more complicated, but where there is a will, there is a way.”
Q: How do you like to stay involved in the MPS or rare disease communities?
I like to read and hear stories about people overcoming obstacles and achieving extraordinary goals. My family is very involved in raising funds for research for MPS and advocating for rare disease legislation. I have advocated a couple of times with my mom on Capitol Hill.
Q: What makes you as Annabelle “rare”?
Just being born this way! Nonetheless, I see myself as a regular, normal person that ended up with a rare disease.
Q: Name someone who is an inspiration in your life and tell us why.
All the disabled activists that organized and mobilized the strategy for the American’s Disability Act (ADA). This law ensures that people like me have the same rights and opportunities as everyone else. I am grateful I have access to places I want to see and things that interest me. I can’t even imagine how small my world would be without those rights. I am so grateful for all those that advocated for my rights long before me.
Q: What is your favorite book and why?
Prisoner B-3087 is currently one of my favorite books, which I have read it many times. It is such an amazing story of determination and perseverance of the human spirit. This story really captured my thoughts on how someone can endure so much tragedy, pain and suffering and still keep going – determined to live through it all and see goodness in the world.
Q: What’s the best piece of advice you’ve ever been given?
In most circumstances, probably not all…if the room feels uncomfortable, make jokes!
Q: Tell us one goal you look forward to working toward accomplishing in the next few years.
Graduating high school with honors and getting into my university of choice, which would have a great veterinarian science program.