When our journey first started, we had no idea how our lives would be enriched by the incredible people we met along the way. Dr. Laurie Burroughs is one of the fiercest and most compassionate individuals we have ever met, and she has tirelessly fought side by side with us for a cure for Idan. Her research at Fred Hutch is precisely what drew us to Seattle for Idan’s transplant, but her care, expertise and creativity is what makes us feel confident that we made the right choice. We are so lucky to have her as part of Idan’s team! Article here and below: https://www.fredhutch.org/en/news/center-news/2016/11/stem-cell-transplant-kids-rare-non-malignant-diseases.html
“When our son, Idan, is old enough, he will probably want to know why he has over 1,500 fans on Facebook. He will probably want to know why we have shared dozens of photos and videos of his childhood with strangers. He will probably ask why, when he Googles his name, dozens of news articles come up telling his story. We will tell him that, at first, we shared his story to help him and us deal with the challenges we faced, but later, we shared his story to inspire others who might be facing similar challenges. I hope he understands, and I hope he forgives us for giving him a digital footprint at such a young age.
At eight months old, Idan was rushed to the emergency room by ambulance with a very low oxygen rate and rapid breathing. A healthy and strong baby boy until that point, he spent the next three weeks in the pediatric intensive care unit, two of those on a ventilator, clinging to life. Idan had pneumocystis jiroveci pneumonia, a rare type of pneumonia only a child with a severely compromised immune system could contract. Idan’s pneumonia led doctors to diagnose him with a life-threatening genetic disorder called X-Linked Hyper IgM Syndrome, orHyper IgM for short. It keeps Idan from being able to produce any antibodies of his own to fight off infection. It meant that without weekly infusions of antibodies and antibiotics prophylaxis, his chances of long-term survival were significantly diminished. A bone marrow transplant was the only known cure.
It had been the hardest three weeks of our lives, and we returned home tired and hopeless. The first thing that greeted us back home was a denial letter from our insurance plan for the antibody infusions, the only thing keeping our son alive. It would be the first of many medical and insurance-related setbacks that we would face over the next couple of years as we fought for our son’s cure. But it set the tone of our struggle and inspired our first battle cry. We decided to share Idan’s story with the world in hopes of not only raising funds to help pay for the medical expenses that were piling up but also to find others like Idan and to learn from them.
In the two and a half years since, Idan has amassed a medical record longer than most nursing home patients. He has endured thousands of needle pokes and dozens of invasive procedures and tests. He has had half a dozen surgeries and one failed bone marrow transplant.
Yet nothing seems to have phased him or slowed him down. He was known at Seattle Children’s Hospital, where he got his transplant, as the happiest baby they had seen during the procedure. His favorite part was entertaining the team of 14 doctors and nurses who came in during his morning rounds. He learned his ABCs and 123’s during the long hospital stays before most kids say their first word. And he has grown and thrived despite having a severely compromised immune system and many restrictions on human interaction.
But we want more than that for Idan; we want a cure. We recently formed theHyper IgM Foundation, a patient advocacy organization that will provide support and resources to families living with Hyper IgM, educate the medical community regarding diagnosis and treatment and provide funds to support critical research and advancements in gene editing, bone marrow transplant and other known and unknown therapies that could help Idan and the hundreds of others in the world grappling with Hyper IgM.
Our family has been put through trial after trial, each more trying than the last. But we’ve learned so much, and through the wreckage, we have found something new and beautiful beyond measure: hope. It’s hard not to feel hope in the company of the most charming, loving and bright child a parent can hope for. We are full of pride, and we feel utter joy in his presence. But we know that, without parents like us – empowered, informed and engaged – children with his disease do not stand a chance. Informed parents join their child’s medical team and must constantly make tough decisions. Bone marrow transplants are long and very risky procedures. Even when a match is found, 15-20% might not survive the first year, and many more have long-lasting effects from the chemotherapy and graft v host disease. Parents must be vigilant with the dozens of medications and infusions their children need post transplant as well as with strict isolation procedures.
For all those parents who have the means and the desire to advocate for more research into a cure for a rare disease like Hyper IgM, we encourage you to do so. Patient advocacy groups are vital to medical advancements, are extraordinarily effective tools and support systems and, importantly, can provide a meaningful path to a cure.”
Another great article on Idan by Tova Ross. Jewish Baby With Rare Disease Needs Bone Marrow Transplant.
Read Full article here: http://bit.ly/1d6jACP Please like and share!
Idan Zablocki Amanda and Akiva Zablocki, Jewish parents on Manhattan’s Upper West Side, are spending the month of Elul on the phone battling insurance companies. Their one-year old son, Idan (“era” in Hebrew), will soon be undergoing a bone marrow transplant for Hyper IgM, a rare genetic immune deficiency disorder that affects only two in a million people. The family’s Rosh Hashanah, Yom Kippur and Sukkot will take place at the Seattle Children’s Hospital as they prepare Idan for the surgery.
For the Zablockis, the theme of being inscribed in the Book of Life in the coming year has taken on new meaning.
When Idan was eight months old, he began experiencing irregular breathing; weeks and many medical tests later, doctors diagnosed him with Hyper IgM, which attacks the immune system and leaves those with the condition unable to fight off common infections. Play dates, trips outdoors and family gatherings became minefields of potential germs and were severely limited or eliminated completely. Akiva, 33, and a former IDF soldier who was raised in Israel, became a stay-at-home father to care for Idan.
“When our family members visit, they have to have changed into fresh clothes beforehand, and if they feel they have any cold or cough symptoms developing, they cannot come at all,” Akiva explains. “Idan is bathed in filtered water and when I take him to Central Park, I have to stay away from the crowds and keep him in a secluded area.”
Doctors say the transplant is Idan’s only hope of a cure, but it’s a risky procedure that carries a 10-15 percent risk of fatality. The Zablockis just spent months flying to different U.S. cities to find the best place for Idan’s surgery, and chose Seattle, where both the bone marrow transplant was invented and the condition of Hyper IgM first discovered.
Amazingly, finally pinning down Idan’s diagnosis and the months-long search for a hospital seem almost easy compared to the monumental struggle they now face as they look for a way to pay for it. The transplant costs an estimated $1 million, and Seattle Children’s Hospital is out of network. This means that insurance will pay whatever it deems reasonable in addition to charging a $50,000 co-pay, and whatever they deem not reasonable will fall to the Zablockis. Furthermore, Amanda, 28, who works as an attorney, will need to take months of unpaid leave from work to go to Seattle, and she and Akiva will need to pay out of pocket for a COBRA health plan. Overall, they estimate they will be responsible for at least $250,000 to $650,000. Idan and his parents.
“Instead of spending the remaining precious days with our son before the transplant in Seattle,” Amanda says, “we are spending our days and nights worrying about insurance and trying to come up with creative solutions.”
She and Akiva, who holds a Master’s in Public Health, utilize their knowledge and negotiating skills for hours on the phone each day as they battle their insurance company for more coverage and decipher obscure bylaws. In their free time, they run an online fundraising campaign for the medical costs Idan’s surgery and treatment will incur and raise awareness of their immense struggle. So far, they have raised just over half of their $250,000 goal.
Akiva also draws from his personal experience; as a 25-year old senior at Columbia University, he was diagnosed with a tumor on his brain stem, and doctors refused to touch it. Akiva fought and researched for months before finding a neurosurgeon in Arizona who would operate, and Akiva survived the risky operation. He observed firsthand the incredible complexities of the American medical system, which inspired him to found Health2Social, a healthcare and social media blog, and earn a degree in public health.
“I almost feel like our family paid its dues with the stress of Akiva’s brain tumor,” says Akiva’s brother, Yitzi. “Lightening should not strike twice. But, if anything, Akiva’s experience did make our entire family more educated on the healthcare system. And if I was sick, I would want my parents to be a lawyer and a healthcare expert with a lot of social clout. Idan is in the best possible hands with them.”
Amanda’s sister Elisabeth says, “I have always admired Amanda’s fortitude and patience, and in the last three months, watching her and Akiva go to the ends of the earth to help Idan, she’s only proven her interminable strength. My sister will never stop fighting, and when she tires, she revives herself by leaning on Akiva. I’ve also seen Amanda in moments of deep sadness, and the strength and happiness she derives from all the well-wishers around the world who have donated to Idan’s fund and written messages of support.”
With much of the press the Zablockis have been afforded focusing on medical and insurance issues, Elisabeth also reminds everyone that at the center of this is Idan, who is in pain much of the time but still retains his joyous and, at times, mischievous nature.
“He likes to dance to music and has long conversations, albeit in a language I don’t quite understand yet, and he can get frustrated when he tries to stand and can’t because he set his expectations too high,” she says. “He makes me laugh with his antics, he’s willing to try any food, and he loves being told a story or sung to. He is only one, but he is a little person who has likes and dislikes, and he is going to have to endure pain no one should ever experience.”
The surgery, which is scheduled for September, requires six month of intensive aftercare and normal childhood vaccinations in Seattle before Idan and his parents can think of returning home.
“We’re a close-knit family, and we feel powerless because there’s little that we can actually do to help,” comments another of Amanda’s sisters, Sabrina. “There’s a hole in our lives because we miss Idan terribly, and he won’t be able to share in our annual Chanukah bash or join us at the Seder table this year because he will be recovering from his surgery. We’re a Jewish home missing an integral part of our family. The words of Rosh Hashanah will haunt me even more than usual this year: ‘On Rosh Hashanah it is written, on Yom Kippur it is sealed, who shall live and who shall die.’ ”
Idan’s full Hebrew name is Idan Yarden ben Esther.
Read more at: http://www.jewishpress.com/sections/features/jewish-baby-with-rare-disease-needs-bone-marrow-transplant/2013/08/21/0/
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Idan Zablocki. Photo: Help Fight for Idan at yourcaring.com.
A rare immune disorder has consumed the life of one young Jewish boy on New York’s Upper West Side, and now his parents are asking friends, family, and the public to help cover the cost of the skyrocketing medical bills.
Little Idan Zablocki was diagnosed with Hyper IgM in his first year of life. The disease affects only two in a million and makes it nearly lethal to be exposed to germs—something hard to avoid in New York City.
“There’s pros and cons,” Idan’s mother, Amanda, told the New York Daily Newsabout living in New York City. “You’re very close to the hospital and your pediatrician. But we can’t take him on the train, we can’t take him on the bus. I never touch the subway pole, and we have to Lysol everything.”
Idan’s father, Akiva, who is from Israel and who had his own brush with death when he had a brain tumor removed that left one side of his face paralyzed, now stays at home and watches the boy while Amanda works.
Adding to the fact the one parent is unable to earn an income is that Idan needs a stem cell transplant to have the best chance at a long, healthy life, a surgery that comes with a 10% to 15% mortality rate—and costs a lot of money.
“The longer you wait, the risk involved in not transplanting sooner is getting PCP, which can be fatal too,” Amanda told the Daily News. To have his surgery while young, healthy, infection-free, offers Idan the greatest chance of recovery.
His parents are currently trying to raise $250,000 for Idan’s treatment, including trips to experts across the globe, lost wages, and relocating expenses, and have already received over $90,000 in donations from over 700 people, many from strangers.
“We literally sent the page out to a dozen friends (on Facebook),” Akiva told the Daily News. “Then people were sharing it. The majority of donations are from strangers, they’re coming in from around the world. We don’t feel alone anymore.”
Throughout, the Zablockis have said their love for each other and for their son has kept them strong, and Akiva’s dealings with doctors for his brain tumor has given them wisdom to ask for the best.
“Idan is just remarkable,” Amanda said. “His spirit and his strength — he has no intention of letting this get him down. It’s given us so much strength and hope.””
This toddler is the picture of his health, but his bright eyes are deceiving. He suffers from a rare genetic disorder that attacks his immune system, making it so he can’t be around other children or go outside like regular kids his age. Roseanne Colletti reports on his family’s struggle and hope for his future.
“NEW YORK (WABC) — A nearly 1-year-old boy in Manhattan is fighting for his life.
He has a rare immune system disorder.
A trip to the playground could kill him.
Now, his family is frantically looking for a donor match and is just as frantically trying to raise money to pay for his treatment.
Idan Zablocki is the picture of pure joy. If only he were the picture of health.
“More than anything, I wish that he could play with his cousins, and go to school, and live a normal life,” said Amanda Zablocki, Idan’s mother.
The adorable baby who will turn 1 in a few weeks has a rare immunoglobulin disorder which affects just one in half a million.
It means his body will never be able to protect him against germs or viruses or infections.
This Upper West Side couple found out the hard way.
When he was only eight months old, the start of a simple cold landed Idan in the hospital on a ventilator.
“It was a very big shock, especially because he was so healthy beforehand, we didn’t see this coming at all,” said Akiva Zablocki, Idan’s father.
There is no cure for this genetic disorder and the life expectancy is only 24 years old.
So, the Zablocki’s are on a crusade for a bone marrow transplant. It is risky and expensive, but right now it is their only hope.
“We know that he can survive this,” Amanda Zablocki said.
The Zablocki’s are a courageous couple. Eight years ago, Akiva was diagnosed with a brain tumor he was told was inoperable.
He refused to accept that and found a doctor who successfully removed the tumor.
Now they’re searching for another miracle surgery for their son.
“I think he’ll be OK,” Akiva Zablocki said.
For more information please visit:
The fundraising site: https://www.youcaring.com/fundraiseforidan
“Amanda and Akiva Zablocki, who live in Manhattan’s upper West Side, are trying to raise money to cover the medical costs for their infant son, Idan, who was born with a rare immune disorder. Years before, Akiva, 33, underwent a life-threatening brain surgery.”
For one upper West Side family, New York is a dangerous minefield of germs and disease, where trips on the subway are out of the question, and bath time calls for bottled water.
Amanda and Akiva Zablocki must take these precautions for their little son Idan, who was born not even a year ago with a two-in-a-million genetic disorder that ravages his immune system and makes a normal childhood all but impossible.
The two got engaged in Dec. 2008 and were married in 2009 in a Long Island synagogue. Little Idan followed three years later.
Amanda, 28, told the Daily News that everything was wonderful with their son for the first eight months, but soon after that, his breathing became irregular and rapid. “We rushed him to the ER one time, and he was diagnosed with PCP pneumonia, which was made famous in the AIDS era in the 80s,” she explained.
COURTESY OF ZABLOCKI FAMILY
Left to right: Idan, Akiva and Amanda Zablocki traveled to North Carolina earlier this month to visit with physicians at Duke, who say that the child needs a stem cell transplant, a costly and dangerous operation. The father, Akiva, has battled health demons, too. He wears an eye patch after a brain tumor surgery left him with double vision.
COURTESY OF ZABLOCKI FAMILY
Idan — whose name means ‘Era’ in Hebrew — spent three weeks in the hospital after his birth. He turns 1 in July.
“It only causes pneumonia in people without healthy immune systems.” Idan was tested for AIDS, but was eventually diagnosed with Hyper IgM. The genetic disorder affects only two in a million.
Living in New York City with a child who cannot be exposed to germs presents its own unique challenges.
“There’s pros and cons,” the mother said. “You’re very close to the hospital and your pediatrician. But we can’t take him on the train, we can’t take him on the bus. I never touch the subway pole, and we have to Lysol everything.”
Most difficult, she added, was that he cannot be around other children, go to day care, or even meet his many cousins for fear of getting sick. Even other children with the sniffles could send him straight to the emergency room. “It’s very difficult for us,” she said.