Lily Allison, a third grader from Loveland, has Ehlers-Danlos syndrome (EDS), a group of connective tissue disorders that are generally characterized by joint hypermobility (joints that stretch farther than normal), skin hyperextensibility (skin that can be stretched further than normal, and tissue fragility, according to The Ehlers-Danlos Society. In Lily’s case, the syndrome affects her joints, but it doesn’t affect what she’s been able to accomplish. Lily has been a Special Olympics athlete, and has published a book called Be Kind, Silly with her mom, Makayla. We spoke with the energetic eight-year-old about her life with EDS.
Colorado Parent: What are some things that you have to do differently because of having EDS?
Lily Allison: I have to be careful not to fall down or let anyone swing me or pull my arms. I also have to be sure to eat lots of fruits and veggies, but that is not a problem because I love drinking smoothies! I also take medicines every day which, to me, is no big deal. I wear knee and ankle braces, and I get to customize what they look like. I have a wheelchair I can use if I hurt or get too tired. I actually love it because I get to wheel around and do tricks on it.
CP: When did you find out you had EDS, and what was going on at the time?
LA: I was six and had just learned how to skip before then. It is really fun to skip but my knees can get really swollen and hurt if I don’t have my braces on.
CP: How does it feel to have EDS?
LA: To be honest, I don’t like having EDS very much and it can be really hard sometimes. It was scary when I couldn’t swallow, and it hurts really bad when I dislocate my pelvis. It makes me feel a tiny bit sad when I can’t keep up with my friends outside, but mostly, I don’t even think about it and still love running races. I wish I could be faster.
CP: Will you always have EDS?
LA: Yes, but it could get better because medicine is always advancing.
CP: How old were you when you got involved in Special Olympics?
LA: I was five. My doctor told me about it.
CP: What sport do you do for Special Olympics?
LA: I am a swimmer. I love the water and am basically part fish, I think! I don’t have to wear my braces when I swim, and I prefer that. I have also played soccer, baseball, football, and hockey with Special Olympics. It’s about a lot more than just playing sports. It’s about meeting friends, including people, and having fun.
CP: What do you remember about the time you first competed in Special Olympics?
LA: I swam on the Cherry Creek Dolphins team with my friend Caitlina. I did soccer, too. Older girls from college taught us how to play at a big park. [University of Denver students] even invited me to come help at their games. I was the water girl and got to practice with them. Sometimes I gave them too much water, like 10 cups each!
CP: Is there anything else you want people to know about EDS?
LA: EDS can affect people in lots of different ways. Sometimes you can’t see it, and sometimes you can. I also want people to know that EDS is just a part of me, it does not define who I am.
Lily’s book Be Kind, Silly, co-authored with her mother Makayla, was inspired by an incidence in which she was bullied by an older girl. Writing helped her process her emotions. To help spread Lily’s message of kindness, Voya Financial will match up to 1,000 books sold, and distribute those copies to schools across the United States during 2020.