This past week Cleveland hosted a special young boy who happens to very ill together with his loving family. Thanks to so many in the community who bonded with this family, offering them chizuk and financial support, and in turn the Cleveland community receiving some much more chizuk and joy.
The family of little Izzy would like to share with other Clevelanders his story. Below appears a few items: a review of his current condition, past history and the family’s story, links to a blog with frequent updates, as well many media articles and videos about Izzy. Also do not miss a post about Izzy’s trip to Cleveland and the love that he brought with him to Ohio facilitated by the Krainess family.
Thank you for opening up your heart to my Malach Izzy. First of all and most importantly, YISROEL ALTER BEN CHAVA CHANA requires the Tephilos of ALL of Klal Yisroel. He was born with a rare fatal disease, called Leukodystrophy that is progressive, degenerative and irreversible .He was born without the white matter in his brain being properly formed; resulting in the shrinkage of the white brain matter, resulting in a slow but steady regression of his cognitive and physical capabilities. At 4 years of age, he has passed the halfway point of his life expectancy. B’derach HaTeva, the medical community knows of no way to cure, halt or even slow the regression of this horrific disease. Izzy has been symptomatic for about 18 months, and from a toddler who would cruise along the house (with holding on), rearranging the kitchen cupboards and eating with a healthy appetite, to a 4-year old, who only occasionally appears lucid, cannot longer cruise, crawl or even sit up, and is fed through a G-tube that was inserted in his stomach. He is unable to talk, so it is difficult to diagnose what ails him. He was hospitalized with Pnemonia, as well as with 2 bouts on the deadly C-diff (http://www.dificid.com/understanding/index.php), once which ALMOST PROVED TO BE FATAL. My Aishel Chayil, Chani, has been forced to put for working career on indefinite hiatus, as she has become the primary caregiver 24×7, as well as a mother who is watching her son die a painful death; Yet I feel blessed by having such a Malach within my midst. While I’m taking care of his Gashmius, he continues to elevate my Ruchnius. He truly gives more that he receives.
I created a CaringBridge site (http://www.caringbridge.org/visit/izzyzundellsjourney) where I disseminate information and pictures of my malach, on a daily basis. Although it began as a way of releasing information to avoid an incessant amount of telephone call, for well-meaning people, I quickly noticed that it became cathartic for me. Shockingly, the feedback that I received was overwhelmingly positive, and I’ve been heralded – Unjustly so – as a person who has inspired so many others, due to the manner in which I accept and praise HaShem for this Matziv, with complete and unwavering faith that HaShem knows what is best for me, my family and for Izzy.
Due to the exorbitant medical costs, including a specific type of therapy known as The Feldenkrais Method (http://en.wikipedia.org/wiki/Feldenkrais_Method), which appears to be the therapy that Izzy is most responsive to, and which is mostly keeping his joints and muscles pain-free, which would otherwise cause him significant pain due to his sedentary positon, in which he spends most of his days. However, this therapy is NOT REIMBURSABLE BY INSURANCE, and has resulted in approximately $25,000 out of pocket accounting for about 2/3 of Izzy’s medical budget in 2014. Through the kindness of Klal Yisroel, we have managed to raise most of the medical funds required for 2014 through a secure on-line website called GoFundMe (http://www.gofundme.com/5mjlr4). This is the quickest and easiest way for Izzy to receive his desperately needed medical funds. As we embark on 2015, we anticipate the Feldenkrais costs to rise to approximately $30,000, and Izzy’s overall Medical Budget to $40,000. EVERY DOLLAR COUNTS. No donation is too small or too large!
Alternatively, one can kindly send a tax deductible check 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” in the memo.
Checks can also be mailed to Gedaliah Krainess.
The introduction to the CaringBridge Web-site, written in October 2013, told the overall picture. Unfortunately Izzy has significantly regressed over the past year.
Izzy’s Story
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. We are going to establish a HILL 2014 fund, as an exorbitant amount of financial resources are required to scale this HILL (Help Izzy Lick Leukodystrophy). This is my journey, and thank you for being a part of it, IZZY
This past February, I was interviewed by Nachum Segal on JM in the AM (See Link Below), where I candidly discussed the disease and the bleak prognosis!
There were also TWO Cover Stories featuring Izzy, in “The Magazine” a Weekly Publication of the Jewish Press, which can be re-printed, as per the Jewish Press, as long as you include “originally appeared in the Jewish Press””
Written by me, after my “Journey of Torah”, where I traveled to Eretz Yisroel to Daven by the Kotel, Maras HaMachpelah, and Kever Rachel, as well as to meet gedolim and beseech there Brachos of Rachamim from HaShem (Attached)
Finally, here are some gut-wrenching videos of Izzy, that highlight a child in desperate need of a miracle!!!!
https://www.youtube.com/watch?v=bMiVBMz9A4I
https://www.youtube.com/watch?v=pZ8SNmL-iMc
https://www.youtube.com/watch?v=ai2VXIlKFBo
More articles are available by contacting neal_zundell@baxter.com
L says
http://www.tehilimyahad.com
this is a great tool – to reach many – to get a lot of tehillim said – with the power of tehillim iy”H