Idan, my hero

Dear Team Idan,

We wanted to share with you some good news.  Seattle called us this afternoon to let us know that they have confirmed the donors and will be scheduling Idan’s transplant very soon.  We should be leaving for Seattle within the next few weeks!  While we are very excited to get Idan on the road to a cure, we also of course very anxious as the time for transplant is soon upon us.

This Wednesday night, we will be celebrating the Jewish New Year.  On Rosh Hashanah, Jews around the world pray that their loved ones be written into the book of life, and have a sweet and good year.  We will be praying for all these things and more for our little Idani, and hope that by this time next year he will be completely cured.  For those who would like to pray for Idan, his Hebrew name is Idan Yarden ben Esther.

We wish you all a sweet and happy new year.

Love,

Akiva, Amanda & Idan

P.S. Don’t forget to follow us on Facebook!  Our Help Fight for Idan page surpassed 1,000 fans today.  Thank you all for your support!

Dear Team Idan,

Thank you for your continued support of Idan’s fight for a cure.  Over the last few months, over 1300 have donated to Idan’s cause and thousands more have shared his story with their friends and networks.  Idan’s story has been covered by many news outlets and has reached millions of people worldwide.  Your kind words of encouragement, your support and your prayers have allowed us to face this challenge knowing that we have an army behind us.  We are forever indebted to you.

Here are a few updates on what has been going on with our son:

The Idan-Do Mohawk Campaign:

Before Idan loses his hair to chemo, we wanted to give him something to remember his signature style by (and remind him of all the people cheering him on) while he undergoes his bone marrow transplant.  So we started the Idan-Do Mohawk Campaign, where people can post pictures of themselves, their children, pets, or even stuffed animals, sporting Idan’s signature hairdo, the Mohawk.  We are creating a large poster for Idan’s hospital room, a piece of which is included above, so that he has a constant reminder that he has an entire army behind him helping him through this difficult time.

Dozens of people have joined in the effort to raise awareness for Help Fight for Idan by sharing a photos sporting Idan’s signature hairdo. You can join in on the fun as well.  The instructions are available at here for those of you who are on Facebook, and for those who do not have Facebook, you can email us a photo at akiva.amanda@gmail.com and we will be sure to include it!

Transplant update:

After a few very challenging weeks dealing with insurance-related issues that threatened to throw us completely off track, it seems that we are finally moving forward again. Yesterday, we received the good news that the insurance company finally determined that Seattle’s treatment protocol is medically necessary and has given the hospital the approval to move ahead with identifying the donor.  We hope to have a date for the transplant within the next few weeks.  In addition, the insurance company is working very hard to arrange for additional coverage for Idan to help fill some of the substantial gaps in coverage that exist under our current plan.  They informed us yesterday they are making significant progress, and we pray that it all works out!  So, after losing 10 years of our life to the stress and even fearing for a while that the whole transplant might not be covered, things are starting to look much better.  If all goes well, we are back to our original goal of $250,000, which was based on the assumption that the transplant would be covered, rather than the incredibly daunting figure that we thought we might be looking at last week.

We do not know how we would have gotten through the last few months, kept our resolve and kept fighting for Idan to get the treatment he so desperately needs without all of you.  When our legs are about to give out from underneath us, you have been the arms that have held us tall.  Thank you for giving us the strength to go on fighting.  As we now move toward transplant, our family will need all the strength we can get in the months to come.

Yours truly,

Amanda, Akiva and Idan

P.S. Don’t forget to follow us on Facebook for more updates and cute pictures of Idan.

We’ve all been having a lot of fun doing the Idan-Do! Here’s a few of the pics that have been posted so far. For the latest update on Seattle and the Idan-Do Mohawk Campaign, go to http://bit.ly/16NEv55.

Who will do the Idan-Do next? Join the Idan-Do family in the Idan Mohawk Campaign!

Before Idan loses his hair to chemo, let’s give him something to remember his signature style by. To join in the Idan-Do campaign:

1) Post a picture of yourself, your kids, pets, or even your favorite teddy bear, sporting the Idan Mohawk

2) Tag Help Fight for Idan

3) Include a link to Idan’s fundraising page: http://bit.ly/17Nz4FN

4) Add a personal note, but make sure to also copy and paste these instructions so more can join in the Idan-Do Campaign.

Your pictures will all be compiled into a mural to hang in Idan’s hospital room while he undergoes bone marrow transplant so he can be reminded of all the people cheering him on. Go#TeamIdan!

Thank you Zipcar® for this touching card and gift for Idan! We were so touched to get this in the mail today and Idan loves his new Build-A-Bear Workshop (and I am sure Amanda and I will need these Starbucks cards during the long days in the hospital in Seattle, the Starbucks Capital ). Remember to check out: https://www.youcaring.com/fundraiseforidanfor updates.

By Anne Cohen:

Read more: https://forward.com/news/181861/jewish-babys-rare-immune-disorder-attracts-global/

Any Jewish mother thinks her baby boy is special. But Amanda Zablocki’s son is one in a million — and in one of the most heart-wrenching ways imaginable.

Idan Zablocki is 1 year old. Three months ago he was diagnosed with a genetic disorder called Hyper IgM syndrome, a rare immune deficiency that actually affects two out of every 1 million people.

“It’s similar to what you know as the ‘Bubble Boy syndrome,’” explained the boy’s father, 33-year-old Akiva Zablocki. “Hyper IgM is like one level down from that. “ Idan cannot drink tap water. Bath time means pouring out bottled water into the tub. Guests must take off their shoes, wash their hands, and sometimes even wear masks and a clean change of clothes.

Though his parents can still touch him and hug him, they also must take precautions. His father, who has the sniffles, has been wearing a mask for the past week in order “not to risk anything.”

“We’re kind of living in our own bubble to make sure we’re not taking anything from the outside and bringing it to him,” said Amanda Zablocki, 28. “Sometimes I hear someone sneeze on the train and I actually change train cars.”

Idan was born healthy, but roughly eight and a half months later he started breathing abnormally quickly as he was recovering from a cold. A couple of weeks later it happened again. In the end his respiration rate got so high that his parents rushed him to the hospital.

“He was diagnosed with a very rare form of pneumonia, caused by a fungus that’s extremely common,” his mother explained. ”It’s almost like getting sick from dust. People who get sick from that are people who have very compromised immune systems.”

Because he has almost no ability to produce antibodies, Idan cannot come into contact with germs. He has an extended family and cousins his own age in Israel and the United States, but he has never met them, as an ordinary cold could be a death sentence.

The Zablockis are no strangers to medical hardship. Eight years ago, Akiva Zablocki was diagnosed with a brain stem tumor that doctors deemed inoperable. Refusing to give up hope, he looked for a doctor who would operate.

A brain surgeon in Arizona proved to be the answer and saved his life, removing the tumor entirely. Though he sometimes has to wear an eye patch, he has regained his quality of life.

His son’s condition “makes my brain surgery look like a paper cut.,” Akiva Zablocki said .”But [he] is strong, and I think he’ll overcome it.”

People with Hyper IgM have three options: They can do nothing, which condemns them to death in their mid-20s from cancers and opportunistic infections; they can use intravenous immunoglobulin, the blood plasma replacement therapy that Idan currently undergoes once a week, or they can have a bone marrow transplant.

After consulting with doctors and medical professionals in England, Canada, Israel and all over the United States, the Zablockis have finally made their decision: They are making Seattle their temporary home as Idan undergoes treatment at Seattle Children’s Hospital, where both bone marrow transplants and Hyper IgM were discovered. He is lucky: Four potential donors have already been identified.

The Zablockis chose Seattle because doctors there use a drug called Treosulfan as part of the chemotherapy that will wipe out their son’s original immune system. Though still not FDA approved for general use, it is being used in clinical trials. The drug is believed to reduce the three fatal complications of bone marrow transplants: complications from chemotherapy, infections and graft-versus-host disease.

“We want to choose the [option] that gives him the best chance of long-term survival with the least complications,” his mother explained. “With a bone marrow transplant, there’s a chance for a complete cure. It takes one to two years to fully recover, but if it’s successful, then he’s a perfectly normal child and he grows just as any other person does.”

But all this comes at a cost. The hospital estimates the medical bill will be between $600,000 and $1,000,000. Akiva Zablocki, who takes care of Idan full time, doesn’t work. His wife is a lawyer, but she will have to take six months of unpaid leave in order to be with her son.

To alleviate some of the costs not covered by their insurance, the Zablockis have launched an online fundraising campaign, and what started as a couple of Facebook posts and emails to friends has turned into a strong network of support: They have raised $124,507 toward their $250,000 goal, with 117 days left to go.

“The response has been amazing,” Akiva Zablocki, said. “Overall, we don’t know the majority of the people donating to the campaign. We sent it to a few friends on Facebook and email, and a lot of people have been sharing it, sending out emails to their congregations. It was very scary for us; we didn’t know how we were going to deal with this.”

“People are praying for Idan,” his wife added. “People we’ve never met. It’s been a very powerful experience.” The Zablockis acknowledged the efforts by Jewish communities in New York and abroad, saying they have been an incredible asset.

“One of the things that has been extremely touching for us has been the large volume of emails from the Jewish community offering to bring us meals, to help, to baby-sit,” Amanda Zablocki said.

“Just the overwhelming response of ‘We’re with you,’ ‘We’re there,’ ‘What do you need?’ We’re trying to draw strength from where we can, and we’re definitely drawing strength from the Jewish community, from New York and all over the world.”

As for little Idan? Well, his name says it all. “Idan means ‘era’ [in Hebrew], like ‘time,’” his mother said. “It’s from the Bible. We were opening up a new era with Idan. For me, the association between era and time, time being so precious and yet so powerful, there’s something very meaningful in that. Idan is very strong, but he’s very precious.”

Contact Anne Cohen at cohen@forward.com

Read more: https://forward.com/news/181861/jewish-babys-rare-immune-disorder-attracts-global/

After 3 months of exhaustive research, the choice is clear.  Seattle, here we come!

Dear friends, family, and supporters of Idan,

Three months ago, when Idan was diagnosed with an extremely rare immune deficiency, we decided that nothing would stop us in our search for a cure. We sought out and consulted every Hyper IGM expert and transplant center that might have experience treating this terrible genetic disorder, and today we can happily announce we have found that place, and hope to be moving forward with transplant in September.

Like his father had done before him, we created a Team Idan, and read and gathered any piece of published data on Hyper IGM. We consulted and/or visited dozens of experts in the US, Israel, Canada, and Europe, including doctors in New York, Boston, Durham NC, Cincinnati, Philadelphia, San Francisco, Los Angeles, Texas, Chicago, and Seattle, as well as the National Institute of Health, Toronto, the U.K., and Israel.   We spoke to patients from Florida, Utah, Illinois, New Jersey, and England.  We dove deep into the science behind the immune system, and learned the names of a dozen chemotherapy drugs, immunosuppressants and steroids as well as their side affects and toxicity levels.  We have become what they call “e-patients,” determined to be fully engaged in Idan’s treatment and cure. But in the end, we heard over and over again, both from doctors and from other patients, we should go with our gut. After all the research was done, after every rock was unturned, we should go with the centers and doctors we trusted the most. That center is Seattle Children’s Hospital.

Of course, the first and main reason we chose Seattle is that they have the expertise to transplant and cure Idan, boasting lower risks of death, long-term complications, and toxicity from the chemo. As we have mentioned before, there are three categories of “fatal” complications in a bone marrow transplant:  (1) complications from the chemo; (2) infections; and (3) graft versus host disease.  Each hospital has a different approach to managing it, but we’ve found that there is one drug that is being used only in Seattle that can substantially reduce all three of these risks here.  This drug is called Treosulfan.  This drug is widely used in Europe and Asia, but has yet to get FDA approval in the United States.  Seattle was using the drug as part of a clinical trial several years ago, and has been granted an IND to continue using the drug.  The rest of the hospitals use a drug called Busulfan that carries significantly more risks of short term and long-term side complications (including sterility), and yet Treosulfan is equally capable of wiping out the immune system to allow for full engraftment.

To add to this, the bone marrow transplant was actually invented in Seattle and the lab that our immunologist runs there was the first to discover Hyper IGM; they are without a doubt both pioneers and leaders in this field. The transplant floor is brand new, built last year by the Gates family, and is clean and high-tech. If we have to live in a hospital 24/7 for 4-6 months, this new facility is a huge plus. Lastly, we truly loved the doctors and nursing staff and the rest of the friendly people we met at the center. We have been getting good vibes from Seattle for a couple of months now, and turns out that was the gut feeling we were waiting for.

It is still going to be an uphill battle. Even before Idan starts the chemo to make room in his bone marrow for the donor transplant, we are dealing with dire financial issues that no one in our situation should ever have to deal with. The estimate we have received from the hospital for the transplant is between $600,000 and $1,000,000. They, like other centers, gave us information about fundraising, like contacting local communities and having a bake sale. Our insurance plan will likely only pay about half of this, and rest will be on us. And to add to this, we both have to move away for 6 months and take an unpaid leave, while paying out of pocket for the health plan through COBRA and probably purchasing a second plan.

This is where you come in. We cannot thank you enough for your help and support in the past few months. We never would have had the strength necessary to find the right doctor and hospital for Idan if not for the constant support and encouragement we have received from our family, friends, and strangers worldwide.  We have raised more funds then we ever thought possible, but we are still less then half way to our goal. We hope we can once again call on you to help spread the word about Idan. We have seen amazing responses every time Idan’s story goes out to a community, synagogue or church listserve. We have seen great responses every time someone writes an article in a local paper. And we have seen amazing responses when you shared our story to your email contacts, or on social media. Please continue to share our story and help us cure our son.

Last night, there was a moment when we felt it was all for nothing – that all of our consultations, trips, and hours spent into the night researching conditioning protocols, complications, and long term risks, would be totally derailed by an inability to afford the care our son so desperately needs.  And in that moment, we felt utterly defeated.  This morning, after scrolling down and seeing the thousands of wishes and prayers and words of encouragement on Idan’s fundraising andFacebook page, we know we can face this challenge too.

With much gratitude,

Akiva, Amanda and Idan

P.S. Don’t forget to follow us on Facebook for more updates and cute pictures and videos of Idan.

We were so touched to discover that Idan’s story was featured in Columbia University School of General Studies’ News Letter. As proud and active CU alums, it was humbling for us to know that we had the support of the community.