“Why was I born this way?” “Did you find a cure yet?” We hear this often from Kiley, 19, when AHC steals her ability to walk, speak clearly, eat, and drink. It’s heartbreaking because she’s aware that she will miss out on the many milestones teens achieve, like driving a car, going away to college, and living on her own.
Kiley was born on May 10, 2001 after an uneventful pregnancy. At 3 months she had her first visible AHC episode, although we didn’t know that’s what it was called at the time. Ten days later we saw her second AHC episode. At this point she was diagnosed with seizures, and we spent the next year trying different anti-epileptic medications to no avail.
But something didn’t fit. Kiley would have a “seizure” and have several days of paralysis afterward that wouldn’t subside for days. We also noticed after Kiley napped during this paralysis, she would awake, able to move, and within 15 minutes the paralysis would set in again. So began our search for an accurate diagnosis.
At that time there was no test for AHC. Kiley’s mom found the NINDS website and read through every single neuro disorder listed from A to Z. AHC, it fit Kiley to a T. A second opinion confirmed a diagnosis of classic AHC. We were relieved to finally know what we were dealing with and took it in stride. We weaned Kiley off all anti-epileptics and started her on Flunarizine, the only medication that showed promise. It is not FDA approved, and although scary, we made the decision to try it. It did help, but it didn’t stop the episodes.
Kiley has a very active life. She is often frustrated by AHC, what it does to her body, and how it limits her. She is aware that she is differently abled, but she still smiles, has a great sense of humor, and is the biggest social butterfly we know! Kiley stays active with bowling, physical therapy, shopping (like most teens), talking on the phone, and eating out.
We’ve had a roller coaster of a journey with Kiley, our family and friends, and AHC. We have struggled with years of AHC episodes, years of aggressive behaviors, years of life-threatening seizures that began at the age of 10, and years of stress due to the unpredictability of this disorder and the secondary health conditions that come with it. Although we try not to let AHC control our lives, we must often adjust and remain flexible. It has taught us patience, understanding, and above all, it has taught us strength and perseverance.
Kiley is the reason we fight so hard for a cure. We will never give up hope to END AHC. We will never stop trying to raise the funds to accomplish this.
We will never give up.