Ava's Story (South Carolina)

Hi, my name is Ava and I am 14 years old. I live in South Carolina and I have 2 older sisters. I was born with Hypotonia and I have intellectual disabilities, ADHD, Autism and ZTTK Syndrome. My Mom found out about my SON gene mutation when I was 10 years old. In 2021 I was diagnosed with ZTTK Syndrome.

I LOVE horses!! I take riding lessons every Saturday and I even work there helping before my lesson. I just love being at the barn and being with all the horses. I would love to have my own horse one day and create that special bond with it. I also love country music, school and my routine. My Mom helps me stay on track.

My life so far has been a lot of doctor visits and a lot of surgeries. I have had 5 sets of tubes, my adenoids out, 2 Strabismus surgeries, surgery for tethered spinal cord, deflux injection and bilateral tympanoplasty and is just some. In 2014, I started having seizures and had to take medicine for that. I have had physical therapy, occupational therapy and Speech, which I don't really like because they take me out of class. I don't like to miss class.

When I grow up I want to work at a horse rescue. I know I can do anything I put my mind to and work hard. Thank you for reading my story and to raise awareness for ZTTK.

Love Ava