Day 75: Shana Tova!

We wanted to take a break from our regular updates to wish everyone a very happy, healthy and sweet New Year!Tonight marks the beginning of Rosh Hashanah, a Jewish holiday celebrating the new year, 5777. Quite unlike the usual new years’ festivities, which may involve boisterous parties and champagne, the Jewish new year is typically celebrated as a community in the synagogue and then at home with family and friends. It is a time of reflection on the past year and of contemplation of the next. The next ten days are referred to the “Ten Days of Awe,” culminating in Yom Kippur, the Day of Atonement.

In the spirit of this holiday, we reflect back on this past year and think about our hopes for the next.

Last Rosh Hashanah, we were in New York with family, praying for Idan’s first graft to stabilize to avoid a second transplant. We had just launched the Hyper IgM Foundation and began what would become the most important work of our lives.

Over the next year, we watched Idan’s graft and chance of a cure slowly slip away. We made the very difficult choice to undergo a second transplant. Once again, we uprooted ourselves and relocated to Seattle. Idan had his second transplant, and, after an exceptionally difficult summer, we now have hope that our little boy will be celebrating Rosh Hashanah for many years and decades to come.

Through our work with the Hyper IgM Foundation, we have connected with patients and physicians around the world to advance research, improve outcomes and even explore new ways to cure this rare disease beyond the risky bone marrow transplant. We have seen tremendous progress on each of these fronts, which I personally credit Akiva’s gargantuan efforts in this regard. We have also suffered unspeakable loss in our patient community, as three boys with Hyper IgM passed away in the short span of just a few months due to complications following bone marrow transplants that were meant to cure them.

It has been a year of heartache and grief. But it has also been a year of hope, of progress, of joy. We hope this coming year will bring the cure we have been waiting for, and we will keep fighting and raising awareness for Hyper IgM to make sure that every child with this disease has hope for a long and healthy life.

Importantly, we wish all of you, who have held our hand, who have encouraged, supported and listened to us, a very happy and healthy New Year. May you and yours have a meaningful and sweet year, and may you all be written in the book of life.

All our love,

Amanda, Akiva & Idan

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