HANNA, 11 (Kodiak, AK) | Kabuki Syndrome, Epilepsy, Autism

HANNA, 11 (Kodiak, AK) | Kabuki Syndrome, Epilepsy, Autism

written by her mother, Kathy
photographed by Breanna Peterson Photography 

Even after 11 years, I remember the day Hanna was born so freshly in my head!

We had a little bouncing baby girl. She was 5 pounds at birth. We came home from the hospital a day later.

Boy, were we in for it. Hanna decided to only sleep in in 20-minute intervals. She also didn't eat correctly…barely eating half an ounce at a time.

When Hanna was 6 months old, we started receiving referrals to different doctors frequently…it seemed almost weekly. We live on an island, so having to travel to Anchorage each time came with its own set of challenges.

By the time Hanna turned one, she wasn't even crawling, let alone walking. We were referred to Infant Learning Program, and then occupational therapy and physical therapy.

As first time parents, we were overwhelmed. Then, out of the blue, Hanna started having seizures. An emergency trip to the pediatric neurologist was then needed, where Hanna was diagnosed with epilepsy.

Well, things didn't end there. We were referred to Seattle Children's geneticist. That trip came to last about 3 years back and forth. They did test after test, then say she had this and that. But I didn't agree!

Finally, on the 3rd year, Hanna’s test came back and she was diagnosed with Kabuki Syndrome. All these weird names were just thrown at us. To us, it was just a name. We loved our daughter dearly just like any other child.

Kabuki Syndrome is a rare, multisystem disorder characterized by multiple abnormalities including distinctive facial features, growth delays, short stature, and other varying degrees of difficulties.

Boy, we have been through the ringer. Just last August, we saw an allergist. Hanna has suffered allergies all her life. But we were there for 6 hours and found out that Hanna has no antibodies, which produce B cells. Hanna would get sick with everything so easily. We also found out that we had to learn to give Hanna weekly IGG infusions (immunoglobulin therapy). We wondered what else could be thrown at us!

Immunoglobulin therapy is the use of a mixture of antibodies (immunoglobulins) to treat a number of health conditions

Hanna is now 11 years old and has defied many odds! We love her to the moon and back we always tell her so! She receives services through Hope Community Resources, has weekly occupational and physical therapy, and we are part of an online Kabuki Syndrome support group.

Hanna has many diagnosed syndromes, but that doesn't stop her, or makes us love her any differently! She is our Alaskan Warrior child!