Month: August 2013

The Idan-Do Mohawk Campaign

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!

Idan in the Jewish Press: Jewish Baby With Rare Disease Needs Bone Marrow Transplant, By Tova Ross

Another great article on Idan by Tova Ross. Jewish Baby With Rare Disease Needs Bone Marrow Transplant.

Read Full article here:  http://bit.ly/1d6jACP   Please like and share!

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Idan Zablocki Amanda and Akiva Zablocki, Jewish parents on Manhattan’s Upper West Side, are spending the month of Elul on the phone battling insurance companies. Their one-year old son, Idan (“era” in Hebrew), will soon be undergoing a bone marrow transplant for Hyper IgM, a rare genetic immune deficiency disorder that affects only two in a million people. The family’s Rosh Hashanah, Yom Kippur and Sukkot will take place at the Seattle Children’s Hospital as they prepare Idan for the surgery.

For the Zablockis, the theme of being inscribed in the Book of Life in the coming year has taken on new meaning.

When Idan was eight months old, he began experiencing irregular breathing; weeks and many medical tests later, doctors diagnosed him with Hyper IgM, which attacks the immune system and leaves those with the condition unable to fight off common infections. Play dates, trips outdoors and family gatherings became minefields of potential germs and were severely limited or eliminated completely. Akiva, 33, and a former IDF soldier who was raised in Israel, became a stay-at-home father to care for Idan.

“When our family members visit, they have to have changed into fresh clothes beforehand, and if they feel they have any cold or cough symptoms developing, they cannot come at all,” Akiva explains. “Idan is bathed in filtered water and when I take him to Central Park, I have to stay away from the crowds and keep him in a secluded area.”

Doctors say the transplant is Idan’s only hope of a cure, but it’s a risky procedure that carries a 10-15 percent risk of fatality. The Zablockis just spent months flying to different U.S. cities to find the best place for Idan’s surgery, and chose Seattle, where both the bone marrow transplant was invented and the condition of Hyper IgM first discovered.

Amazingly, finally pinning down Idan’s diagnosis and the months-long search for a hospital seem almost easy compared to the monumental struggle they now face as they look for a way to pay for it. The transplant costs an estimated $1 million, and Seattle Children’s Hospital is out of network. This means that insurance will pay whatever it deems reasonable in addition to charging a $50,000 co-pay, and whatever they deem not reasonable will fall to the Zablockis. Furthermore, Amanda, 28, who works as an attorney, will need to take months of unpaid leave from work to go to Seattle, and she and Akiva will need to pay out of pocket for a COBRA health plan. Overall, they estimate they will be responsible for at least $250,000 to $650,000. Idan and his parents.

“Instead of spending the remaining precious days with our son before the transplant in Seattle,” Amanda says, “we are spending our days and nights worrying about insurance and trying to come up with creative solutions.”

She and Akiva, who holds a Master’s in Public Health, utilize their knowledge and negotiating skills for hours on the phone each day as they battle their insurance company for more coverage and decipher obscure bylaws. In their free time, they run an online fundraising campaign for the medical costs Idan’s surgery and treatment will incur and raise awareness of their immense struggle. So far, they have raised just over half of their $250,000 goal.

Akiva also draws from his personal experience; as a 25-year old senior at Columbia University, he was diagnosed with a tumor on his brain stem, and doctors refused to touch it. Akiva fought and researched for months before finding a neurosurgeon in Arizona who would operate, and Akiva survived the risky operation. He observed firsthand the incredible complexities of the American medical system, which inspired him to found Health2Social, a healthcare and social media blog, and earn a degree in public health.

“I almost feel like our family paid its dues with the stress of Akiva’s brain tumor,” says Akiva’s brother, Yitzi. “Lightening should not strike twice. But, if anything, Akiva’s experience did make our entire family more educated on the healthcare system. And if I was sick, I would want my parents to be a lawyer and a healthcare expert with a lot of social clout. Idan is in the best possible hands with them.”

Amanda’s sister Elisabeth says, “I have always admired Amanda’s fortitude and patience, and in the last three months, watching her and Akiva go to the ends of the earth to help Idan, she’s only proven her interminable strength. My sister will never stop fighting, and when she tires, she revives herself by leaning on Akiva. I’ve also seen Amanda in moments of deep sadness, and the strength and happiness she derives from all the well-wishers around the world who have donated to Idan’s fund and written messages of support.”

With much of the press the Zablockis have been afforded focusing on medical and insurance issues, Elisabeth also reminds everyone that at the center of this is Idan, who is in pain much of the time but still retains his joyous and, at times, mischievous nature.

“He likes to dance to music and has long conversations, albeit in a language I don’t quite understand yet, and he can get frustrated when he tries to stand and can’t because he set his expectations too high,” she says. “He makes me laugh with his antics, he’s willing to try any food, and he loves being told a story or sung to. He is only one, but he is a little person who has likes and dislikes, and he is going to have to endure pain no one should ever experience.”

The surgery, which is scheduled for September, requires six month of intensive aftercare and normal childhood vaccinations in Seattle before Idan and his parents can think of returning home.

“We’re a close-knit family, and we feel powerless because there’s little that we can actually do to help,” comments another of Amanda’s sisters, Sabrina. “There’s a hole in our lives because we miss Idan terribly, and he won’t be able to share in our annual Chanukah bash or join us at the Seder table this year because he will be recovering from his surgery. We’re a Jewish home missing an integral part of our family. The words of Rosh Hashanah will haunt me even more than usual this year: ‘On Rosh Hashanah it is written, on Yom Kippur it is sealed, who shall live and who shall die.’ ”

Idan’s full Hebrew name is Idan Yarden ben Esther. 
Read more at: http://www.jewishpress.com/sections/features/jewish-baby-with-rare-disease-needs-bone-marrow-transplant/2013/08/21/0/

http://bit.ly/1d6jACP

Please like and share!

ZipCar Gift for Idan

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.

 

So… Seattle?

 

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

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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.

 

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