Although we never know how we will respond to a life-altering event until faced with it, it is hard to imagine anyone who could welcome such a test in the way personified by Shmuel and Chani Zundell. There is no sense of “why me?” or “why should such a sweet child be afflicted with such a terrible disease?” Instead the Zundells have used this challenge as a way to strengthen not just their own emunah, but that of their children and their entire community.
At 11 months of age, Izzy Zundell could happily occupy himself with banging the pots and pans on the kitchen floor. His older brother Roovy, and sister Batya, delighted in playing with him and, other than the fact that he seemed to be a little slow to walk and talk, life was normal. When he was a year old, the Zundell family moved to Chicago.
As time went on and he lagged behind in the usual milestones of walking and talking, Chani and Shmuel took him for testing. The hearing deficiency discovered when he was 20-months-old seemed to explain the lack of verbalization, and he was promptly fitted for hearing aids. Early intervention therapists began working with him extensively. Izzy was cruising and walking holding on for a time, yet never seemed to progress further. The therapists were puzzled. While his undiagnosed hearing loss might have accounted for some spatial and balance issues impeding his initial ability to walk, they could not determine what was still holding him back.
Izzy’s official diagnosis of Leukodystrophy came right before his third birthday. Leukodystrophy is a fatal genetic disease that currently has no known cure. As it is not an inherently Jewish genetic disease, it is not tested for in the standard Dor Yesharim testing. There are currently more than forty different known varieties of this rare genetic disorder (there are many others simply deemed “type-unknown”), all of which are a result of problems with the growth or maintenance of the myelin sheath. Damage to this sheath slows down or blocks messages between the brain and the rest of the body. This leads to problems with movement, speaking, vision, hearing and mental and physical development.
Izzy has a rare form of this disease, Multiple Sulphatase Deficiency (MSD), which further complicates the treatment, and course of the disease. It is not known what Izzy’s life expectancy will be, but children with this disease rarely live past the age of 10.
Where some parents would find this a blow too difficult to face, Shmuel Zundell looks at it as a fantastic opportunity to espouse his tremendous bitachon, and also to bring people together.
“There is no better community for us to have found ourselves in, than Chicago. I often say ‘Mi K’amcha Chicago.’ Not just the members of our own shul (Adas Yeshurun), but people from the Chicago Center for Torah and Chesed, the Bikur Cholim and other local organizations have all rallied around us, even though we are relative newcomers to this community.
“Hashem Hu Haelokim – I see it every day. I look back at the fact that though we could not see the ramifications, it was clear that Hashem sent us to Chicago when he did, that Racheli (Izzy’s younger sister) was born before we knew the diagnosis that we would be facing, that everything in our life is here for a purpose, and my job now is to face this development with ahava, love.
“Izzy’s upsherin came out during the week of parshas Vayelech. In that parsha we read about Hakhel, the gathering of all the people to hear the Torah, and it hit me that Izzy’s mission is hakhel – he has gathered together so many different people from so many walks of life, all connected in davening, caring and supporting us through this journey.”
The Zundells are seeing small but significant signs of regression in Izzy. Where once he would laugh and giggle, now there is little affect on his pixie-like face. Though he can hold his cup, it is now only if his parents guide his hands to the handles, where not so long ago he could pick it up on his own. Though he can eat and chew it is unknown how long this will continue. His daily meals are supplemented with Pediasure, and even though he seems to be consuming calories, he is not gaining weight and is so small for his age, that people ask if he and his sister Racheli (age 18 months) are actually twins. Izzy is also no longer capable of cruising or even crawling.
Shmuel finds the responses to his posting on www.caringbridge.org/visit/izzyzundellsjourney to be a tremendous source of chizuk. Knowing that there are people across the globe rooting for them, saying Tehillim and caring about Izzy is a tremendous comfort. He believes that Hashem has “lent” Izzy to their family, and having more people saying Tehillim and involved in chesed on his behalf can only be a help.
Shmuel and Chani try to be open in their communication with the two older children, letting them ask all their questions, and relating on their level that Izzy will not survive, and that everything comes from Hashem. Shmuel shared a very poignant incident about Batya in his on-line journal:
One often ponders how much of a difficult concept/situation can actually penetrate the mind of a 7 year old. After my previous one-on-one conversation with Batya I pondered this very idea. It didn’t take long to find a response to my query, as last night Batya requested another one-on-one meeting with me to further discuss her feelings about Izzy. I approach her expecting nothing specific but was prepared for anything and everything. What Batya had decided to share was absolutely astounding – nothing short of amazing. She mentioned that she requested permission from her teacher at school to address the class about Izzy today, because I told her yesterday that if something was bothering her and/or something was on her mind regarding Izzy, it is best that she expresses it, rather than let it fester inside – so long as she’s comfortable expressing her feelings. She said that although she was a little nervous about getting up in front of the class because she only recently learned about Izzy’s condition, she was determined to be brave. She addressed the class as follows:
She mentioned that although Izzy cannot talk or walk he’s special and that eventually God is going to take him back, and although we are all going to miss him because we love him, we know that he will be going to live with God, which is the best possible place to live. Therefore, we will all be happy to know that Izzy will be living in a far better place. She also explained that although he can’t talk on this earth, his soul has a special ability to be able to speak directly to God, and God is going to ask him what he did in this world and he’s going to say that he helped people get along and helped people to stop fighting. She concluded her public address that it’s important that everyone care for Izzy and everyone love Izzy because although he doesn’t know how to do many things by himself he can also help a lot of people get along.
Where Shmuel is open and forthcoming, Chani is more reserved. But there is no mistaking the pain in her heart as she holds Izzy on her lap. “No one sees the daily struggle,” she says softly. Not knowing what the progression of the disease will be, it is impossible to know if what happens each day is a harbinger of doom or simply the current plateau. “One afternoon Izzy took a nap from noon to 5. I was in his room every half hour checking his breathing and wondering if everything was okay. All I could think of was what if I had lost track of time and didn’t go in as often and might have found him not breathing?
“How will I know if it is a crisis?” One morning after his nap Izzy woke with a blotchy rash on his face, and his eye seemed a bit swollen. With another child, Chani would take a wait and see approach, and only if it progressed would she make a call to the doctor. But everything with Izzy is an unknown. Chani places the call, worrying that the day may turn on whether they have to take Izzy to the emergency room. Thankfully, the doctor feels it is something minor (probably a rash from his face resting on saliva that dripped while he slept) and the day returns to “normal.”
And of course, while Chani’s day is structured around Izzy, Racheli needs her mother as well, and she is trying to maintain life as normally as possible in a house of 4 children, a task that can be challenging even when life runs at an even keel. Shmuel says, “People keep on complementing me for my attitude, religious conviction and my determination, but what they fail to realize is Chani is my backbone; and without her I’d be nothing!”
When Racheli was born, Izzy was 22-months-old. Although at that time he was showing signs of delay, there was no suggestion of the dreaded diagnosis that they received only a few months ago. “It is hard to see Racheli developing at such a rapid rate – she walks, has started to talk – and look at Izzy who has regressed. G-d sent the refuah before the makka – he gave us Racheli to remind us to laugh and be entertained by her toddler antics at a time when we are struggling with the challenges of Izzy’s disease.”
Although leukodystrophy is considered a terminal disease, the doctors have no way of knowing what Izzy’s lifespan may be. While the Zundells have seen definite signs of regression, these could plateau and there is no real blueprint for them to consult. For now, they are leaving no stone unturned in Izzy’s treatment. Chani has spent hours on the phone trying to get Izzy the custom-made wheelchair he needs to allow him to attend a specialized toddler program for several hours a day. He has aged out of early intervention therapies, but there are a variety of ongoing therapies they are pursuing, including several not covered by health insurance.
Izzy smiled today when we went to look at him waking up from his nap on the dining room floor. The sun was shining down on him and Chani said how she thinks he likes the sun. It was the most beautiful yet heartbreaking smile to me – beautiful, as there is nothing as charming as a smile on the face of a child; heartbreaking as Chani said they are few and far between.
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Contributions to help Izzy can be made online at HILL 2014:Help Izzy Lick Leukodystrophy: http://www.gofundme.com/5mjlr4 or mailed to: The HILL fund (Help Izzy Lick Leukodystrophyl )
Congregation Adas Yeshurun
3050 W Touhy Ave
Chicago, IL 60645
Please make the check payable to Congregation Adas Yeshurun, and include “Izzy Zundell – HILL” in the memo. Every dollar contributed will be used for Izzy’s care.