By Neal Zundell
I’m 3 years old and I don’t walk or talk, but if I did, I would tell you my story. My birth seemed normal. The nurses said I had a good cry and good grip. I did fail my initial newborn hearing test, but in fairness to me I was newly born and really had no time to study for it. Besides, the doctors and nurses told Mommy and Daddy that there are lots of false positives. I began to develop normally, turning over at 3–4 months and crawling at 7–8 months.
When I was 9 months old, my pediatrician said not to worry about my hearing, as I was responding to his voice. If I had been able to hear that clearly I would have said otherwise. By the time I was a year old I was trashing/rearranging pots and pans and my favorite drawers—the cutlery drawers! I still wasn’t walking at 18 months, but my lazy 9-year-old brother walked at 18 months and my lazier 7-year-old sister at 19 months.
By 20 months, Mommy and Daddy got nervous and took me to an audiologist. We found out I was born with moderate hearing loss, and I was fitted for hearing aids. Although I ordered ones that pick up ESPN, they didn’t pick up cable TV. I was still not walking at 21 months so they took me to a pediatric neurologist. The man, who looked older than Father Time, said he saw nothing neurologically wrong with me. But I got into early intervention and got speech, occupational, physical, and every other type of therapy to strengthen my leg muscles. I would cruise along the house against the wall, or walk holding on, but was unable to walk without assistance.
They said I was significantly developmentally delayed. One prevailing theory was my balance and motor skills were off because I wasn’t hearing correctly. The progress was slower than anticipated and I still wasn’t walking or talking at two-and-a-half years old. Mommy and Daddy took me to a really good pediatric neurologist at the University of Chicago Children’s Hospital. They took an MRI and all sorts of blood tests, including genetic testing. They were fairly certain that I had some genetic syndrome, but which one was anybody’s guess. Daddy and others were leaning towards autism, and shortly after my third birthday on August 28, 2013, these tests were performed.
On an autumn Friday, the neurologist called with the most devastating news. It was a disorder called leukodystrophy. I won’t sugarcoat this—it’s a non-reversible, non-fixable degenerative genetic disease. In simple English, it’s terminal and fatal. We all have so many questions, but until we know the class of my specific disease, there will still be too many unknowns. After their initial guess proved incorrect, the doctor took more genetic tests, which are expected to tell the entire gloomy picture within 4–6 weeks.
Mommy and Daddy are coping as best they can. They believe G–d put me here on this world to unite people, and that is what I intend to do for as long as I’m on this transient earth. Don’t feel bad for me; I’m doing what G‑d intended for me to do. And don’t feel bad for my family. As Daddy says, G‑d feels my family is special and worthy to have such a special child in their care. I may not know how to walk and talk, but I most certainly know that I’m loved by my parents, my siblings, and so many family members and friends. So we will fight the good fight. Please join me as I scale the tallest HILL (Help Izzy Lick Leukodystraphy) of my life. We are going to establish a HILL 2014 fund, as an exorbitant amount of financial resources are required to scale this HILL.
This is my journey, and thank you for being a part of it. ϖ
To contribute to the HILL 2014 Fund, visit www.gofundme.com/5mjlr4 or kindly send your tax-deductible checks to Congregation Adas Yeshurun; 3050 W. Touhy Ave; Chicago, IL 60645. Please make out the check to Congregation Adas Yeshurun, and include “Izzy Zundell – HILL-2014” in the memo.