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Idan’s 1st Transplantversary

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It has been over four years since our son, Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, and an army of supporters came together to support our family as we headed into a bone marrow transplant to cure our little boy. Two transplants later and a long journey with many hospital stays, a cure appears to be within our reach. Idan is doing amazing and will be going to kindergarten this fall. In July, we will celebrate not only Idan’s fifth birthday but also his first Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant.  Our journey is not over, but we rejoice and celebrate this milestone and give thanks to all of you who have walked this road with us. So many other children with Hyper IgM have been less fortunate, whether with transplant outcomes or without having a donor match to even journey down the road for a cure. The Hyper IgM Foundation, which we founded, is working tirelessly to support these families and to help find a cure for all children and adults living with Hyper IgM Syndrome.

13697129_1332607503435880_8894533746877192939_nLast year Idan’s army helped raise over $19,000 in support of the Foundation and the research grants we provide. The Foundation is helping to fund cutting-edge gene editing research that will hopefully provide a safe and long lasting cure for Hyper IgM Syndrome. Today, we ask you to help us bring this future closer and make a donation in honor of Idan’s One Year Transplantversary.

Our goal is to raise over $25,000 this summer in honor of Idan’s cure and in support of the Hyper IgM Foundation. This will allow the foundation to increase its research grants to the labs focused on gene therapy and accelerate a cure.

Three ways you can donate:

 

Other ways to support the cure:

Help us spread the word! Pass this email along, or share our Facebook fundraiser. Start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

HyperIgm

More about the Hyper IgM Foundation:

The Hyper IgM Foundation aims to improve outcomes and quality of life for Hyper IgM patients and their families through promoting and supporting research, creating and providing educational tools for the patient and physician communities, and creating a community to support Hyper IgM patients and their families as they undergo treatment and cope with this disease. Between Akiva’s extensive experience in public health, Amanda’s legal background in healthcare and nonprofit law, our fellow board member Dr. David Hagin’s cutting-edge research into gene editing for Hyper IgM, and our scientific advisory committee that consists of the foremost experts on Hyper IgM in the world, we are confident that we can make a tremendous impact.

We hope you can join us again in support of a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

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The Hyper IgM Foundation is a recognized 501(c)(3) charity and all donations are tax deductible. We thank you for your support and invite you to stay up-to-date on the Foundation’s efforts by connecting with us on Facebook by liking the Hyper IgM Foundation Facebook page, www.FB.com/HyperIgMFoundation, and by visiting our website, www.hyperigm.org.

As a reminder, the Hyper IgM Foundation is entirely a volunteer-run organization. We have no salaries, no rent, and limited overhead. This means that 100% of your donation goes to fulfill our mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IGM Syndrome through research, support, education, and advocacy.

Day 306: So much for playgrounds:

img_5698Apparently, new-found freedom and normal kid activities come with normal kid injuries!

Idan fell off the playground today and broke his wrist. We took him to the ER at Cornell (a few too many flashbacks as we walked right past the same room he was first taken to 4 years ago when he had PCP). As usual, they took very good care of him there. We had our pediatrician call ahead to let them know he was post-transplant and they cleaned a room for him and had it ready within minutes after we arrived. Idan spent the first few hours in a lot of pain until they could do the procedure to move the bone back into place and set a cast. Idan was stoic as usual, and put on his brave face as he got poked and prodded right where it hurt. The procedure to set the bone was successful, and the doctors expect the bimg_5701one to heal nicely.

After a long and exhausting day in the ER without being able to eat until 6 (at which time he gobbled down a PB&J sandwich), Idan was able to come home just in time for a nice chocolate treat for dessert.
Hopefully, we are looking at only a few weeks of this cast. Once his bone heals nicely and fully, he can finally get back on track with kids activities.

Day 303 – The New Normal:

It’s been a while since we last wrote, and as in the past, no news is good news. At the end of April, we tested Idan donor chimerism again. In a reversal from the March results, which showed a dip in chimerism, the donor t-cells went back up to 89%. We were very pleased with his results. His other cells have been dancing around, but overall, if this stays the case, Seattle believes this may indicate a stabilization of his graft. Of course, as always, it is too early to know for sure, but as we approach the year mark for Idan’s transplant this July, we will feel good if his grafts stays at this level. 

The next step we are starting to explore is getting Idan off the last few medications he is on and maybe entertaining a break in his immunoglobulin infusions. We are waiting for word from Seattle if they feel it is a good time to do this. As you may recall, Idan had been getting weekly infusions of antibodies since his diagnosis at eight months old. These antibodies have been the main thing keeping him safe all these years, but with his new donor immune system, it may be time to see if he can produce his own antibodies and make a response to vaccines. This would be the main test for a functioning immune system. 
In the meantime, our NY transplant doctor has run many functional tests and feels like it is safe for Idan to start partaking in normal childhood activities. Last month we signed him up for soccer classes and he got to be with other kids his age for the first time. We started to get reacquainted with play grounds, which Idan has missed out on for a long time, and he is loving exploring all the different ones in our neighborhood. We got the green light for him to play in the grass, pick up twigs and sticks, acorns or rocks, things that may seem mundane but Idan has felt excluded for far too long from these childhood activities. Think about that for a second. Idan is almost five but, fearing unknown bacteria, fungus or parasites that lurk in fresh soil, Idan has never picked up a stick or rock in the park in his life! He gave a big bashful smile when we told him he can do this now. 
Up next we have a lot planned. First, he and we are open for play dates with kids both inside and outside, so let us know if you are Upper West Side folk 🙂 Next month we will head to to Anaheim, California for the National immunodeficiency Foundation Conference and enjoy a couple of days in Disneyland! Yes, you heard us, Idan is going to Disneyland!!!! None of us know what to expect, but we are all excited for the adventure! 
As always, we are thankful to all of you for following our journey and supporting us and our cause. Look out for Idan’s One Year transplant anniversary in July along with a fundraiser for the Hyper IgM Foundation (or as Idan cutely calls it, the Hyper GGM Foundation) in honor of Idan’s excellent health. Our hope is to break last year’s record and help accelerate a cure for all children with Hyper IgM Syndrome.

Day 227: Finally, some good news!

For the past five years, we have watched our baby boy suffer in so many ways. Today, for the first time in what seems forever, his future seems bright and unlimited.  
The latest chimerism results are in, and, without getting too excited, it looks like Idan’s graft may actually be starting to stabilize! Since we took Idan off immune suppression in December to stop the graft from continuing to fall, Idan’s t-cells have inched their way up, one percentage point at a time, from a low of 79% donor to 85% donor as of last Monday. 85% gives Idan an excellent chance of a cure, so we are hoping that this latest trend continues! What has been worrying us is that, until last week, Idan’s myeloid cells continued to fall, which threatened the long term chances of the graft sticking around. So we were very happy to see that his myeloid cells did not drop this time, and instead went up by a percentage point!  
We are cautiously optimistic that things are finally starting to turn around. Idan is healthy and joyful and has a full head of curly and unruly hair. Transplant and chemo feel like a lifetime ago to us, but every once in a while there are reminders. A couple weeks ago, a song came on the radio that Idan used to love, and he begged us to turn it off. We asked him what happened, and he explained that the song made him feel sick, like he was back in the hospital room getting chemo. Memories of the song playing and me dancing to it to cheer up Idan when he was having a particularly painful day came flooding back to me, and I understand why that same song now has the exact opposite effect. And last week, Idan told us he didn’t want to wear a tank top because sleeveless shirts make his neck hurt. He later explained that he thinks these shirts hurt because the last time he wore them was right after his central line surgery, when his neck was in terrible pain for several days. It turns out that was the last time he wore a tank top. We are 227 days post-transplant, and I guess we were hoping that Idan, who turned 4 the day after his transplant, would forget some of these memories. Then again, these experiences are part of him, and even if we can say goodbye to Hyper IgM, I want him to always remember a few things about transplant:  
1. Idan didn’t just survive, he endured.  
2. He showed the world – and himself – how strong, brave, and fearless he is.  
3. He got to the other side. Sometimes that’s all you can do when things are really bad. 
4. He is loved, cherished, and supported. His parents and family never left his side, and never will. 
5. He witnessed the goodness in people all over the world. From the staff at the hospital, to the strangers in Seattle who embraced us into their community, supported us, and gave us a second home, to the army of supporters from around the globe, he saw and felt the awesomeness of helping others.  
So, even if it can be painful to remember, maybe it’s not such a bad thing that we do.  
While we are waiting to see whether this good trend in Idan’s chimerism continues, we are slowly starting to expose Idan to the happy carefree side of childhood. Last weekend, he rode on a carousel for the first time ever. As we spun around and around, we waved to Idan’s grandparents watching from the side, and I smiled to my mother and shared tears of joy with her in seeing Idan enjoy just being a kid.  
After quietly taking this new experience in, Idan turned to me and said, “Mommy, I will never forget this day.” Neither will I.

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