My name is Calen. I am 15 years old. My parent’s have many ridiculous nicknames for me, but I can best be described as fun loving fury. I have wide eyes, an infectious smile, and lady slayer blond hair, which come in handy because I like nothing better than to dance. Play me a beat and you won’t be able to resist bouncing around with me. I also happen to really like basketball, wrestling, monster trucks, splashing, trampolines, and roller coasters! Yup, I’m a bit of a dare devil!

When I was born, doctors didn’t know what was “wrong” with me. I had low muscle tone and spent several days in the NICU. As I got older I struggled with severe respiratory and ear infections. I have had surgeries to correct strabismus and then later to remove my adenoids and tonsils for sleep apnea.

I started having seizures when I was a year and a half. Doctors told my parents I would never walk. Countless tests always came back negative.

I was a mystery and it made my mom and dad really sad and angry.

For 15 years, I have fought every day to share my endless joy with the world. I defied odds and took my first steps at age five. I no longer have seizures. Also, when I was eleven, doctors finally found an abnormality in my DNA, a significant deletion and duplication on chromosome 19. It would have been nice to find this out when I was born! It could have saved a lot of money and heartache.

But the fight is not over. We have a finding, not a diagnosis. Thankfully, I have an awesome family and support network who love me and care for me. Together we will continue to fight for my rights, and my friends’ rights, for proper health services and a free appropriate public education. Fun loving fury… here we come!

and…the doctors told my parents I would never be able to walk. I bet I can make your day if you watch the link below!

https://www.facebook.com/TuteGenomics/videos/vb.337418673035365/706243109486251/?type=2&theater