Month: September 2013

And all Idan wants to do is dance:

09/20/2013

Great news!!! We are literally floored. After 48 hours of frantically searching for a private jet to fly out to Seattle, sharing our plight with nearly 25,000 people, hundreds of which were sharing with their contacts and hunting down leads, we have a flight! A very generous wonderful man has offered to fly us all back in his private jet as he returns to the west coast from New York City tomorrow night. We are overjoyed and extremely humbled by the outpouring of support, and the way you all mobilized so quickly to help Idan. He is quite a special boy and you all played a part in helping to save his life this week. THANK YOU from the bottom of our hearts!!!

09/18/2013

 Idan needs your help flying to Seattle

Looking for a Private Jet to fly out to Seattle Having exhausted all other options, we are turning to you for help!

Idan needs your help getting to Seattle! Anyone have access to a private jet or know anyone that does? We were supposed to fly through Corporate Angels to Seattle because of his severe immune deficiency, but that fell through. Our first appointment in Seattle is September 24th (Tuesday). The owner of the Jet would be able to donate the flight through Corporate Angels for a tax deductible.

Commercial flights pose tremendous risk to Idan because of his severe immune deficiency. Between the dense crowds at the airport and sitting on a plane with dozens of strangers, commercial flights are well-known for germs. Idan’s too little to keep a mask on, and even that cannot protect him from all the germs. We’ve looked into all the non-profit options for flying by jet, and they either do not have any flights available in the next few days, or would require us making several pit-stops along the way.

Thanks in advance for your help!

~Amanda, Akiva & Idan

Dear Team Idan,

More good news!  We finally have a date for Idan’s bone marrow transplant.  Our first appointment at Seattle Children’s Hospital is scheduled for September 24th.  From there, we will have about 3 weeks of tests to confirm that Idan is well enough for transplant.  Assuming all goes well, Idan will be admitted into the hospital around October 12th, receive about 5 days of chemotherapy, have a day of rest, and his bone marrow transplant will be on or about October 18th.  For those of you who like numbers, 18 is “chai,” or life, in Hebrew.  Idan will spend about 50 days in-patient, and another 50 days or so near the hospital before we can return to New York.  We hope that his new immune system begins to grow and develop over the course of the next year.

The donor they have chosen is 23 years old, male, and healthy.  He is a perfect match for Idan and even has his blood type.  To save the life of a child is the greatest gift in the world.  if you’re not registered as a donor in the national bone marrow registry, it is as easy as a cheek swab (see www.giftoflife.org for more details).

Over the course of the next week, we will be preparing to leave everything and everyone behind for six months in the hopes that we will return with a fully-cured little boy.  Since we announced that we were going to Seattle, we’ve received dozens of emails and messages from complete strangers offering their support, their friendship, and even their homes, and it makes all the difference.  Incredibly, we’ve received donations from over1,400 people through our fundraising site, allowing us to reach nearly 75% of our goal.  We feel stronger than ever, and could not have gotten to this point without all of you.

For those interested in more frequent updates during the transplant, follow us on Facebook, visit our new blog (which we’re still working out the kinks…) atwww.idanmyhero.com, and join the Idan-Do Mohawk Campaign!

Thank you all for your support!

Love,

Amanda, Akiva, & Idan

A Note on Generosity: In the past few months we have been on the receiving end of so many acts of kindness from friends and strangers alike. While we cannot always find the time to thank everyone personally, it is the support we get from #TeamIdan that keeps us strong and gives us hope as we enter into the next stage of our journey. This post is all about you!

Here is a non-comprehensive laundry-list of what Team Idan has done: You have donated your time and money to support Idan. You have Liked, Shared, and spread the word about Idan’s cause around the world. You have written articles and published stories and reports in the news and media. You have written, emailed, called, texted, stopped us in the street, and left notes on our fundraiser page to encourage us and give us strength.

You have sent books, toys, DVD’s and more to keep Idan entertained in the hospital and at home. You have planned everything from rooftop parties to bake sales to support Idan. You have styled your hair or your kids’ and pets’ hair into crazy Idan-Do Mohawks. You have prayed for him in many languages and in many ways. You have advocated for us with the insurance company and doctors. You have babysat, played with and entertained him. You have brought us home- cooked meals and you have planned elaborate food delivery schedules for our next hospital stay. You have offered us your homes, cars, services, and your friendship in Seattle. You have advised us on medical areas we have only started to understand. You have been a shoulder to cry on and an ear to listen.

You have done all this and more and asked nothing in return. You generosity knows no limits and your kindness is humbling. We wish we can thank each and every one of you and give you a hug. Human nature is inherently good and you have all proved this. Thank you #TeamIdan for all you do.

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.