Idan, my hero

Our first full day in Seattle and we are getting used to our temporary living situation (SCCA House) and getting reacquainted with Seattle. Our appointments start on Wednesday. As before, the Seattle community has been so amazingly welcoming and have gone out of their way to help us get acclimated (including lending us a car to get around while we’re here). One very special 12 year old has organized for all her friends, as part of her Bat Mitzvah cause, to get Idan new toys and activities to keep him busy during the long days ahead. Below is just the first batch of many amazing toys she has organized for Idan. We are so thankful too her and the many that have donated these items to bringing a smile to Idan’s face and keep him busy.

Ever get that feeling, towards the end of an intense dream, that things all of a sudden start malfunctioning or, even weirder, morph into something else?  Where all of a sudden, despite passively accepting all of the nonsensical parts of the dream when it first began, you become aware of the illusion?  Reality seeps in, and you open your eyes.  Maybe sunlight washes over you, maybe the buzz of the alarm shocks you into motion, or maybe it’s the sound of a baby’s cry that gets your feet planted on the ground.  

Sometimes this is comforting, no?  Sometimes you fall into a deep sleep, and the dreams are frightening.  They show you a world where you are alone, fighting, struggling, running.  The moment where the illusion ends is met with a sigh of relief – everything is okay, you’re awake now.  

Sometimes it is the opposite, though.  The dream – the illusion – is a sanctuary against reality.  A peaceful interlude that gives you a break from the chaos.

The other night, I had a dream that I was living in a small claustrophobic room, and directly above my head, there was a hole in the ceiling where I could see trucks and cars passing right over us.  Mindy Kaling from The Mindy Project was asleep on the floor to my right (like I said, nonsensical), and seemed blissfully unaware that we were living right under a highway, and that there was no way out except to climb out of this hole and risk being run over.  As I was plotting our escape, trying to figure out how fast we needed to climb out of the hole and dart across the highway in between the cars zipping by to get to safety on the other side, the walls started morphing, and suddenly our little bunker turned into the back of a truck.  Someone else was driving the truck, and Mindy and I were still in the back, this time being jostled back and forth, not knowing where we were going.  At this point, the illusion started to fade.  I could believe Mindy sleeping on the floor of my underground bunker, but I could not believe that the bunker had turned into a truck.  Reality began to seep in, and I woke up.

I was relieved to be awake.  The sun was shining right through the window, Akiva was sleeping peacefully next to me, and Idan was in the other room, beginning his morning ritual of sweetly talking to himself until either I or Akiva came in to greet him.  

I was relieved to be awake, but had I really woken into reality?  Isn’t our life here, in a way, an illusion?  A peaceful interlude before the chaos of transplant?  The whirlwind hospital days and pre-testing leading up to admission, the unpredictable but inevitable events and incidents post-transplant, the constant trips back and forth to the clinic, the pharmacy, and the hospital, and the gargantuan efforts required to turn the whole trip into an adventure, yet still maintaining some semblance of normalcy, for Idani as every little fiber of his being is tested and challenged… isn’t that reality?  

This week, our home appliances have been taking the biggest hit, each of them taking turns malfunctioning.  The illusion of our peaceful life here is slowly being peeled away, and, come Sunday afternoon, we’ll be jerked into reality.  Maybe it will be the Seattle skyline washed in sunlight, or maybe the wheels touching the ground that shock us into motion, or maybe Idan’s voice sweetly talking to himself as he gazes out the window of the airplane, but we’ll open our eyes, and the illusion will be over.

I don’t know how I’ll feel when I wake up from this particular dream.  I don’t know if I’ll be relieved to be taking our first step towards the end of a horrible nightmare, or if the fear and chaos of transplant will be overwhelming.  But I do know that, as long as Akiva and Idan are by my side, I am ready to wake up.

 

Three years ago when our baby boy Idan was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, an army of supporters came together to support Idan and our family as we headed into a bone marrow transplant to cure our little boy. Although the transplant was unsuccessful, something unique and special came out of that first battle:  the Hyper IgM Foundation. As Amanda and I immersed ourselves in everything Hyper IgM in order to find a cure for Idan, we learned of the dire need for a community and voice for the Hyper IgM patients around the globe. HIGM is rare among an already rare family of genetic diseases categorized as primary immune deficiencies. The little information we could find tended to be outdated or inaccurate. We set out to not only fix this but to gather patients and families from around the world to create a stronger voice for Hyper IgM Syndrome patients in hopes that a combination of advocacy, education, and focused research will accelerate a cure and better outcomes for all families with Hyper IgM.

Three years later, we are going into battle again for our little boy, and behind us, we hope, stands the same army that helped us in our original fight. As we head back to Seattle for Idan’s 2nd transplant, we are calling on you to help not only us, but to help all children with Hyper IgM Syndrome. Idan is one of the lucky ones, he has several matched donor options for a transplant, but for many others transplant is not possible.  And the cure itself comes with significant risks, with transplant complications taking the lives of two other little boys with Hyper IgM in the month of May alone.  Our goal is to raise funds for research into gene therapy and other techniques that can provide curative options for all HIGM patients.

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 for a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

For those of you interested in following Idan’s journey, we will be updating Idan’s blog and Facebook page on a regular basis. We are heading back to Seattle on June 19, and expect to be admitted to Seattle Children’s Hospital in July for 4-6 weeks. For the second time, we’re packing our bags and uprooting our lives. The decision to move forward with a second transplant was even more difficult than the first time, knowing what we do now about the risks of transplant, but we have to believe that Idan will be cured, and that he will have a brighter future.

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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.

Today marks the third anniversary since that fateful trip to the ER.  The very first sign we had that our world would come crashing down.  I remember our silent speedy march to the pediatrician’s office that morning.  The devastating news that Idan would need to be transported to the ER, immediately, because he wasn’t getting enough oxygen.  The fights with the doctors to allow us to feed him, with a burning feeling in the pits of both Akiva’s and my stomachs, knowing that his condition was deteriorating right before our eyes.  It’s an indescribable feeling to watch your baby be poked, prodded, and struggling to breathe. To know that the next breath could be his last.

When we walked into the hospital that day, we stepped into a vortex.  An unfamiliar and unfriendly world.  We were terrified beyond belief, and drew strength and courage from the one person who seemed to have more than any of us put together – Idan.  It astounds us to this day that, despite tubes down his throat, in his nose, IVs in both arms and legs, restraints on his wrists tethering him to a grown-up size bed, surrounded by strangers and loved ones wearing masks and yellow gowns, despite all that, his little fingers curled around the little caterpillar his grandparents gave him, and his eyes shone bright, and he smiled and giggled.  We turned on the music and danced in his room.  We did puppet shows and read books, we even introduced him to Sesame Street (all the rules about screen time seemed to fly out the window).  Three weeks spent in the pediatric ICU, and Idan fought off PCP – a pneumonia that threatened to take his very life.

You all know how the story goes by now… We emerged from the hospital to discover that his pneumonia was simply the introduction to an even scarier world: the world of Hyper IgM.

When we started this journey, we felt so alone.  The disease was so rare, and there was no simple way to reach others who had it.  That all has changed.

After three years, we have built an army of other parents, patients, and physicians who know all about Hyper IgM.  We receive messages and emails on a weekly basis, introducing us to a newly diagnosed family, or patients who have lived with the disease for decades.

Earlier this week, we spoke to a mom of nine children who shared her story with us.  Five boys born with Hyper IgM.  Three of them passed away much too soon.  Two days later, we were contacted by a family who, like us, rushed their son to the ER because of PCP.  And that same week, a family from South Korea, who found the Hyper IgM Foundation’s website and expressed such gratitude that, after so long of fighting this disease on their own, finally they were connected to a community of others facing the same challenges they do on a daily basis.  When these families were introduced to the Hyper IgM community we founded a couple years ago with the few other families we had been fortunate enough to meet, the response was overwhelming – as it always is.  Dozens of comments of welcome, advice, and support.  I read the comments on my way home from work, and burst into tears.

Yes, we were so alone once.  As were all of these families living in different corners of the world.  New York, Louisiana, Ohio, Florida, Texas, Illinois, Canada, Australia, New Zealand, England, the UK, Romania, South Korea – just to name a few.  We have all joined hands, and all of a sudden, one voice was replaced by one hundred voices.  We have supported each other through bone marrow transplants, infections, even cancer and death.  We are not alone anymore.

For the past three years, we have spent every free moment becoming experts on Hyper IgM, consulting with the world’s foremost immunologists and transplant teams, attending conferences and meeting families living with the disease.  Last year, we formed the Hyper IgM Foundation to improve the quality of life and longterm outlook of patients with Hyper IgM, and we have been so grateful for the outpouring of support we have received.  We are already accomplishing our mission, which is in large part due to the tireless efforts of Akiva, who has spent every waking minute working closely with families, physicians, and other immune deficiency networks and foundations.  We have found friends and allies in physicians around the world who volunteer their time to consult with parents about treatment options and frequently lend their wisdom to answer questions raised by members of our community.  Because of the work of the Foundation, there is now heightened attention on critical research that needs to be done to understand more about this rare and tricky disease.  So not only are Akiva, Idan and I not alone anymore, no one with Hyper IgM has to feel alone – ever again.