Thank you all for making this campaign the success that it was. If you wish to continue to support Izzy's journey, please access the following link, which will keep you informed of his progress in his endeavor to slow the degeneration of this ugly ideses via experemental therapy.
Neal, this is wonderful what you have written. I'm so glad you did. The Feldenkrais Method, and its offshoot: The Anat Baniel Method for Children, helps children like Izzy, in so many ways. We CAN use this method to slow down the devastating effects of Izzy's disease and keep him comfortable without the strong medications. And, because the brain and body are one, in the Feldenkrais world, then movement of the body directly effects the brain. Izzy is coming alive to himself during the lessons and that can help him be happier and more connected into his world. There are a number of entries on You Tube of Anat Baniel's work, but some of you on Izzy's Caring Bridge may want to check out this particular YouTube video showing Anat Baniel - she has a great way of talking about the method and its impact on the whole body/brain and learning. http://www.youtube.com/watch?v=CNVw4ZISLMs&list=PL92B4619E56B56338
I'm almost 2/3 of the way to sponsoring an additional person to join the Journey of Torah on behalf of his family. Your continued support gives mommy and daddy hope that one day I will be able to thank you personally. In appreciation for all that you've done for me, I'd like to assist another family in need.
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 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
Chani and I, on behalf of Izzy, cannot adequately thank all of you who contributed towards his journey. We pray for God to show mercy upon our precious angel, and your generosity has enabled us to be in the best possible place to personally beseech his mercy.
What I know Izzy wants is to afford the same opportunity that I have on his behalf, to others who also have critical needs and will benefit from this journey. Hence, I will attempt to raise additional funds, to provide scholarships for others who are also experiencing financial hardships in addition to dealing with life-threatening issues!!!
Nothing will ever be the same now that Izzy has been diagnosed and has full blown symptoms of Luekodystrophy. We now are living on heightened alert. Things that we tend to simply shrug off at it relates to other children. such as a simple cold, or throwing up after lunch, with Izzy, creates a state of heightened alert. There is no simple cold, simple case of diarrhea, or simply throwing up when it comes to Izzy. Every incident is magnified, and cause for concern. We received a dose of this reality on Sunday.
Izzy awoke from his nap around noon, and the right side of his face had patches of red that were chafed. Additionally, he had some swelling around his right eye and on the right side of his lip. With any other child we'd examine the redness and monitor him or her, checking if the swelling was going down over time and ensuring that the rash wasn't spreading. Basically, as parents, we would take a "wait and see" approach. However, with Izzy even a simple rash puts us on heightened alert! We immediately contemplated rushing him to Emergency Room. The good news was that he had no fever and had a normal appetite. Yet we were quiet concerned and somewhat petrified.
It was a Sunday and our pediatrician was not on call, so we called the off-hours service. We also called another pediatrician in the area who was working even though it was Sunday, but given that Izzy was not his patient, never returned our telephone call. Finally, the doctor who was on call from our pediatric group, returned our frantic call and felt that since the swelling had begun to go down, coupled with the fact that rash had not gotten any worse, there was really no reason to rush Izzy to the ER because there really wasn't any treatment that they would apply; especially given the fact that he had no fever and he had a very good appetite - in fact he had 3 4-ounce yogurts for lunch, that's 12 ounces of yogurt for a little guy who weighs under 23 pounds (at age 3). That's a pretty robust lunch.
On Monday morning we reached our pediatrician. Thankfully by then the redness looked considerably lighter and the swelling looked significantly better. The doctor said that given the rash had shown significant improvement, coupled with the fact that he hadn't run a fever and had a normal (actually more like his father's) appetite, there seemed to be no reason to bring Izzy in to the office "“ Phew, crises averted!
Yes, this turned out to be nothing more than an innocuous rash. However, for 24 hours we lived with more uncertainty; wondering if we should rush Izzy to the ER, and not knowing if we were going to spend the night (or longer) in the hospital. Naturally, we made several trips into his room throughout the night to make sure that he was okay -- and breathing!! The rash was most likely either the result of him spitting up in his sleep and laying on top the spittle, or possibly the result of having a brand new sheet on his crib that hadn't been pre-washed. However, with Izzy we couldn't take that chance and most certainly could NOT afford to simply ignore the situation. For 24 hours we worried that we might he heading for a return trip to the hospital. Thank God it turned out to be a false alarm, but regarding Izzy, nothing occurs without at least pulling the alarm and finding out if it's something to be concerned about.
Fortunately it turned out to be nothing more than a scare --- this time!!!!!
The Week in Review: Nov-10-2013
By Neal Zundell "” Nov 10, 2013 7:26am ï‚šï‚™ïƒ”î€ªEdit the post "The Week in Review: Nov-10-2013" ï€”It's 6 AM on a Sunday morning as I ponder the week in review. I guess the biggest piece of news that occurred during this past week was that after allegedly finally procuring an official diagnosis of which type of Leukodystrophy Izzy has been stricken with, we finally had the long-awaited consult with the head geneticist and the chief pediatric neurologist, only to find out that they now strongly think it's a cousin genetic defect from the one that they had originally said he had ! How does this affect us? Well for one, the treatment regiment going forward will be fairly similar and his life expectancy is probably similar, although what they now suspect to be the actual diagnosis can potentially be more symptomatic, and result in Izzy possibly being in more pain down the road. However, without officially knowing the actual diagnosis definitively, we can't get genetically test the other children, as the doctors are not 100% certain which gene and which mutation to test for. Therefore, although the chances of the other kids having this disease but being presymptomatic are very low, particularly in the cases of Roovy and Batya, we have to wait for yet another genetic test to come back with Izzy's results, which translates into having to wait yet another two months until we can even test Racheli (Roovy & Batya too) to confirm that she/they does/do not have the disease. While the odds are heavily in Racheli's favor of not having the disease (and even more so in the cases of Roovy and Batya), given everything that we've been going through with Izzy, we really need 100% confirmation that the other 3 children are healthy.
Roovy and Batya seem to be doing quite well and particularly Batya seems to be comfortable not only with her feelings, but with expressing them "“ even publically. This week she decided to address her entire class and educated them that she has a brother who's half human and half angel. For a seven-year-old to be able to have that perspective and have the peace of mind that God created Izzy to be a special child, it is highly unusual, and wise well beyond her years!
We made some new friends this week, and one in particular, who has been there in every sense of the word for me, and especially for Chani. Once again, we are grateful to God for giving us such a wonderful support system, in such a wonderful community, while dealing with Izzy's horrific disease. People have reached out to me/us, the world over, and I believe the greater the amount of prayers said on Izzy's behalf from across the globe, the more likely God may opt to perform a miracle. No matter what lies in store for Izzy, Chani and I accept it as God's will, which is true and righteous. People continue to visit Izzys CaringBridge site, continue to sign his guestbook and continue to read and respond to my posts. I cannot adequately express to what extent this is cathartic for me. My only request is that you keep on reading, keep on signing and keep on responding. It means the world to us, and the book that I will eventually create will be Izzy's eternal legacy.
Finally on Friday I decided to kick off the campaign entitled "Izzy's journey of Torah". This is my attempt to raise enough funds to join a group of people that are traveling from Chicago to Israel to spend a week visiting some of the greatest Rabbis of our generation, as well as visiting some of the most holy places in the land. This will provide me an opportunity to PERSONALLY pray at the those holy places that God show mercy for my little angel, in whatever matter that God deems merciful. Moreover, it will provide me a PERSONAL opportunity to beseech these holiest of rabbis to pray on behalf of Izzy. As I've previously started; if someone needs a critical and dangerous operation they would most certainly travel halfway across the world to find the best possible surgeon available. Similarly, when one needs a miracle from God they need to seek out the people that are closest to God; the ones that have his proverbial personal cell phone number, and a direct line to God himself, and PERSONALLY request they beseech God via their holy prayers to perform the miracle of miracles, and spare Izzy's life!
I imagine over the coming weeks and months, life (for now) God willing, will settle into a steady-state until said time when Izzy's disease degenerates even further. However, to date it appears that while each passing week provides more answers, these answers continue to only directly result in even more questions and unknowns. We are still trying to settle into a new house, settle into new family dynamics and I, as always, am deeply concerned about the mental well-being of the family, most specifically Roovy and Batya, but also my anchor, Chani, who continues to be the steady person at the helm, even in the face of so much adversity. 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!!!
Have a good week, full of good tidings from the almighty,
After my consult yesterday with the chief neurologist and head geneticist at University of Chicago Children's Hospital, one thing which was already crystal clear has become even more apparent to me; according to medical science there is no cure for Izzy! Chani and I have accepted God's will, wholeheartedly and without any questioning of God's intent. The one sliver of hope that I do hang onto as tightly as possible is that occasionally miracles do come true. I'm also well aware that ONLY GOD perform miracles; not the doctors, the nurses, the drugs, the treatments, or the pharmaceutical companies -- only God himself!
I, therefore, believe with 100% certainty, that Izzy journey includes an aspect that is quite spiritual; it's "A Journey of Torah (the Bible, and other holy scriptures)! There are those few people who I believe -- with 100% conviction "“ that are the greatest of the great, holiest of the holy in our generation . Rabbis whose lives are so pure, their souls partially reside in the world the come even as their bodies traverse this transient world. I firmly believe that when these rabbis prayed for a terminally ill child, although they may not get the answer from God that they seek, their chances are of beseeching a miracle from God are significantly higher and when a regular Joe such as myself, invokes the same prayers. These special few, to use modern day vernacular, have God's personal cell phone number and a direct line to God, while the rest of us need to go through the general switchboard, in the hope that our call is appropriately routed to God.
Having said that, I've become aware of "A Journey of Torah" that is taking place during the latter part of February. For approximately one week a group of people will be flying to Israel and spending each day, from the crack f dawn until well into the night in the presence of these great rabbis and the places where the our ancestors lived have been buried. There is better other place or better way to beseech mercy from the almighty to perform a miracle and heal our precious Izzy.
I'm well aware that the expenses of such "journey" are exorbitant and that the typical view of such a trip to Israel (or France or Hawaii :. For that matter) is considered to be a luxury or a pleasure trip. To me, to be able to shake the hand of these totally holy people, get a blessing from them and to have them pray on behalf of my Izzy is NOT a luxury, but rather more than a necessity. It's the BEST form of alternative therapy when dealing with a situation where conventional medicine has no answers and no cure. Who is better likely reach God and invoke that a miracle be performed, a doctor with direct access to medical solutions or a holy man, with direct access to God himself??????????????? While doctors can aid in curing diseases for which there is a known science and or medical cure, when it comes to beseeching God to perform a miracle, it is ONLY the people that have direct access to the ultimate the doctor, who have any chance! to God.
It will cost approximately $2000 to be able to join this journey; and to date I'm only $2000 short -- I don't know logistically how I will join this holy mission, but I know one thing -- come the end of February I will be on that plane. I do not know how I will procure the necessary funds, but I do know that God has a master plan! If there was some experimental alternative medical therapy halfway across the globe, I'm 100% sure that procuring the funds would not prevent me from being on the next plane with Izzy, no matter how unlikely the therapy is of being effective. To date God has proactively placed me in all the right places prior to on onset of Izzy's symptoms, so that he would be in the best place with the best support network, and receive the best medical care. If God deems that I be in Israel at the end of February, there is no doubt my mind that I will be there!!!
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