I'm 3 years old and I don't walk or talk, but if I did I would tell you all 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 just 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. When I was 9 months old my pediatrician said not to worry about my hearing as I was responding to his voice. If I was able to clearly hear that I would have said otherwise. By the time I was a year old I was trashing/rearranging pots/pan and my favorite draws - the cutlery drawers!!! I 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 a moderate hearing loss and 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 2 1/2. Mommy and Daddy got me into 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 3rd 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 sugar coat this - it's a non-reversible, not 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 God put me here on this world to unite people together, 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 God intended for me to do, and don't feel bad for my family. As Daddy says, God feels my family is special and worthy to have such a special child as myself 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 much family 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. Leukodystrophy). This is my journey, and thank you for being a part of it, IZZY
I have been receiving an experimental physical therapy known as the Feldenkrais method, and we have witnessed moderate success. Daddy wrote an entire article about it on my CaringBridge site ( http://www.caringbridge.org/visit/izzyzundellsjourney), describing the Feldenkrais method, and the small but real improvements that the family has witnessed in me. given that is experimental, and not an FDA approved therapy, no insurance will reimburse any of it!! Although my long-term prognosis is bleak at best, in the short-term, my Mommy & Daddy are committed to doing everything possible that they can possibly do to help me, their precious angel. As long as there is a strong possibility that this unique therapy is helping me, even to a modest extent,we must raise the funds to enable me to receive this therapy, at least two weeks out of the month! The therapy alone will cost a staggering $30,000 in 2014, and when including my supplemental vitamins (yuck!) and potentially other paraphernalia, that cost increases to a minimum of $35,000. BUT WITHOUT THIS THERAPY, I HAVE NO CHANCE AT ALL :(
So PLEASE help my mommy & Daddy help me try to fight this dengenerative and fatal disease and help be in climbing the largest HILL of my short life!!!
Thank you and God Bless you all,