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,
To contribute to the "Izzy's Journey of Torah" fund access the following link: http://www.gofundme.com/562r9o#
To follow Izzy's Journey as he battles Leukodystrophy access the following link: http://www.caringbridge.org/visit/izzyzundellsjourney