\How we got here: Idan’s Story
Last July, we stood in front of a crowded room and introduced our baby boy to the world. We spoke of the long journey that we took to get to this moment in our lives. Akiva’s quest to find a brain surgeon willing to and capable of operating on his brain stem to remove a tumor threatening his life, and unleashing the superhero within. Amanda’s pursuit of her childhood dreams. Our love story. And now, Idan. A child born to parents who could not be more grateful, more blessed, more thrilled to begin this new journey as a family. Hence Idan’s name. Idan is Hebrew for “time,” or “era.” We knew our little guy would be unusually strong, and we wanted him to have an equally strong name. What could be stronger and more precious than time?
Nearly a year later, Idan has proved us right. He is precious, uniquely strong, extremely brave, and has began his own journey. Idan has been diagnosed with a very rare and life-threatening immune deficiency disorder that affects only 2 in 1,000,000 people. This is his story, and how you can help.
In April, Idan started breathing very quickly. There were no other symptoms to cause alarm. He played, ate, and seemed perfectly normal, except for his respiratory rate. We went back and forth to the doctor, everyone believing it was a sneaky virus that would take its course and go away. When two weeks passed and Idan began looking fatigued, we took him back to the pediatrician for a second x-ray. We were rushed to the hospital, and Idan was taken to the pediatric ICU to be given oxygen. He was hospitalized for several days before we found out the culprit, a very rare form of pneumonia caused by the most common of fungus that lives in nearly all of us – PCP. It wreaked havoc on his baby lungs, and he had to be placed on a ventilator for 13 days to help him breathe. The doctors busily ran tests to determine why he developed PCP, a condition that usually affects those without an immune system. But he was our healthy 8 month old boy, right?
We soon discovered he had a severe immune deficiency, which made him uniquely susceptible to this aggressive fungus that threatened to take his life. We stood by his bedside, for 21 days, wearing gowns, masks and gloves, unable to hold, kiss, or even touch him. Despite all that, and despite tubes invading every inch of his body, Idan courageously found strength to smile, even to laugh. We stood by his bed and read to him, sang to him, danced for him, and deep down, we knew that he was the one comforting us the entire time. His smiles and intuitive stares, ones which belonged to a much older adult, not a child, told us he was strong and going to survive the PCP and conquer his immune deficiency. After three excruciatingly long weeks, Idan’s lungs finally recovered. He regained his strength and was discharged from the hospital.
Idan came home and resumed many of his normal routines, and you would never know he spent weeks in the hospital fighting for his life. But after Idan was discharged from the hospital, we faced a new challenge – diagnosing the underlying problem with his immune system that made him uniquely susceptible to the fungus that causes PCP. It was not long before Idan was diagnosed with Hyper IgM, an extremely rare and life-threatening genetic primary immune deficiency disorder where the immune system fails to fight against even the most harmless of germs – hence the PCP. We have no family history of the disease and never saw it coming.
Today, we are treating Idan’s Hyper IgM with regular weekly infusions of immunoglobulin replacement therapy and antibiotics to prevent reoccurrences of the PCP. This will protect him from the majority of infections, bacteria and viruses, but cannot protect him against everything. To date, most individuals with Hyper IgM have not survived past their third decade of life, and are often plagued with recurrent infections and high incidence of cancer. We are hopeful, however, that the medical advancements made in the last ten years with stem cell transplantation in children with Hyper IgM will allow Idan to live a normal healthy life. When his lungs have fully healed, Idan will need a stem cell transplant, which, though it comes with its own set of risks and challenges, is the only known cure. Thankfully, we have already found a donor who is a perfect match.
How You Can Help
We need your help raising funds to enable us to make sure that, no matter what happens to us, Idan has the best possible medical care, a successful transplant, and enough funds to cover the medical costs he will incur along the way. This will help to pay for Idan’s hospitalization for the PCP, extensive genetic testing, weekly infusions of immunoglobulin, frequent trips to the pediatrician, immunologist, pulmonologist, and transplant team, as well as the cost of a stem cell transplant and future hospitalization. We know we cannot do this alone, and, to that end, we have set up this fundraising page for Idan.
Please post, send to your family and friends, and share liberally. We appreciate any and all support that you can provide. Please note that any gifts to Idan are not tax deductible. If you would like to pray for Idan, his full hebrew name is Idan Yarden Ben Esther.
We will literally go to the ends of the earth to find the best medical care for Idan. This disorder is so rare that there are only a few doctors around the world that have even encountered it, let alone know how to treat it effectively. We are hopeful that, with your help, Idan will have access to these experts and will be cured.
Thank you,
Amanda, Akiva & Idan
June 28: Greetings from Baltimore! We are in the second leg of our journey to find a cure for Idan. We are in Baltimore attending the national IDF (Immune Deficiency Foundation) conference, along with more than 1,000 other patients and caregivers diagnosed with an immune deficiency and over 30 professionals who have experience treating such diseases.
