I will never forget the sounds coming from deep inside my body. Giant Axonal Neuropathy was the diagnosis…. “There is nothing that will help Hannah. She will weaken and lose all abilities”.
The only control I had, literally was of my bowels. I jumped up and draped my body over the exam table in front of me. In between cries like I had never experienced before, I sobbed and repeated, “No God, she’s so precious, no God, no. She’s so precious!”
That was nearly 14 years ago. As I write this message to you, in your darkest days, Hannah is incredibly happy and so am I! We are living our best lives! I want to tell you our story to give you a candle of hope in these dark days.
Do we wish things were different? Yes. But we haven’t allowed GAN to get in the way of happiness and contentment.
I recall being frustrated with Hannah’s third-grade teacher. Hannah was still getting good grades but was falling behind due to a lack of stamina. She came home from school tired, and I was getting tired of doing the home projects that Hannah didn’t have the dexterity to do.
I clearly recall the day I decided we were done with homework, done with studying for tests, and done feeling guilty about it! That’s not how we wanted to spend our precious time! I figured if we found a treatment in Hannah’s lifetime, she could keep changing jobs until she felt fulfilled, and a degree isn’t needed for that.
Hannah longed for friendships; her peers from preschool and elementary school didn’t pay attention to her any longer. So we traveled to New Jersey and looked at a school for disabled children, as I was willing to move if Hannah wanted to attend a school with peers. Sadly, Hannah would have been the only child at the school without cognitive impairment, so she remained at her high school throughout her junior year (the second year of the Covid-19 Pandemic).
During the Pandemic, Hannah would connect to school via zoom twice a week. She was in the community-based work development program. The lessons were very basic, common-sense scenarios about the workplace and work ethic and she was incredibly bored.
In May of 2021 following a Zoom session, Hannah said, “I have an idea. How about I graduate this year?” I stopped in my tracks, turned to her, and said, “That is a fabulous idea!”.
While Hannah lacked the number of credits to officially graduate, we let her “graduate” a year early. Another great decision! I realize that if both parents have to work outside the home, this may be impossible, but forcing academics to prepare a child with a short life expectancy for a career is something we chose not to do and have no regrets.
If Hannah enjoyed school and actually wanted to go, of course, we would have supported her. Instead, we chose to support her unconventional wishes and I’m so happy we did!
As I write this to you, I’m sitting in the lobby of our apartment building in Delray Beach, FL. Winters in the northeast are brutal. Hannah hates it! I promised Hannah we would spend this winter in the Florida sun and am very thankful I was able to make this happen.
The early months of Hannah’s diagnosis were my darkest days. As I dove into genetic disease, I was able to begin to feel thankful Hannah was given GAN and not Batten Disease or Canavan Disease, where the essence of the person is quickly gone after the onset of symptoms. Despite her physical challenges, Hannah is very much here, and she is happy.