Gift Of Life Bone Marrow Registry Delivers Holiday Miracle For Family:

NEW YORK (CBSNewYork) – When we say gift of life, we usually think of organ donation.

There’s another, much easier way to give the gift of life through bone marrow or stem cell donation, reports CBS2’s Dr. Max Gomez.

Now during the Festival of Lights, a young Jewish family wants people to know how that gift saved their son’s life.

You would never know it looking at 6-year-old Idan Zablocki playing with his mom and baby sister, but Idan was born with a lethal immune system defect.

“He couldn’t make antibodies and he got a very rare pneumonia,” said Akiva, Idan’s father.

“Terrifying, we were told he had a 50 percent chance of dying,” said mother Amanda.

Idan survived his pneumonia but the only cure for his immune deficit was a bone marrow transplant. His first at age 2 failed.

He then got another from a young college student who had gotten swabbed to get matched and enter the Gift of Life bone marrow registry.

The second transplant worked, but Idan said he was pretty sick in the hospital.

“I felt very bad,” he said, but it soon proved worth the pain when he found out he could go to a regular school.

READ:NYC Marathon Runner Meets Man Whose Life She Saved

Now the Zablocki family has teamed with the Gift of Life registry to get people to make an online menorah, to remind friends and family how easy it is to give.

“It’s not a big deal, it’s more like giving blood or platelets,” said the organization’s Nicholas Hudson.

Mom and dad now have a healthy, happy boy who’s been cured thanks to a bone marrow donor, especially meaningful during this season.

“This holiday we celebrate the miracle of Chanukah, well, we have our own miracle,” said Amanda.

On August 17th Amanda and I published the following op-ed to the Guardian telling Idan’s story and calling for people to get involved with the Hyper IgM Foundation:

“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.”

Crowdsourcing taps the kindness of strangers

Updated 10 Dec 2013, 8:55pm

Technology has filled potentially fatal gaps in the U.S. healthcare system by providing families with the opportunity to ‘crowd fund’ their medical bills.

Source: Lateline | Duration: 4min 35sec

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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By Anne Cohen:

Read more: https://forward.com/news/181861/jewish-babys-rare-immune-disorder-attracts-global/

Any Jewish mother thinks her baby boy is special. But Amanda Zablocki’s son is one in a million — and in one of the most heart-wrenching ways imaginable.

Idan Zablocki is 1 year old. Three months ago he was diagnosed with a genetic disorder called Hyper IgM syndrome, a rare immune deficiency that actually affects two out of every 1 million people.

“It’s similar to what you know as the ‘Bubble Boy syndrome,’” explained the boy’s father, 33-year-old Akiva Zablocki. “Hyper IgM is like one level down from that. “ Idan cannot drink tap water. Bath time means pouring out bottled water into the tub. Guests must take off their shoes, wash their hands, and sometimes even wear masks and a clean change of clothes.

Though his parents can still touch him and hug him, they also must take precautions. His father, who has the sniffles, has been wearing a mask for the past week in order “not to risk anything.”

“We’re kind of living in our own bubble to make sure we’re not taking anything from the outside and bringing it to him,” said Amanda Zablocki, 28. “Sometimes I hear someone sneeze on the train and I actually change train cars.”

Idan was born healthy, but roughly eight and a half months later he started breathing abnormally quickly as he was recovering from a cold. A couple of weeks later it happened again. In the end his respiration rate got so high that his parents rushed him to the hospital.

“He was diagnosed with a very rare form of pneumonia, caused by a fungus that’s extremely common,” his mother explained. ”It’s almost like getting sick from dust. People who get sick from that are people who have very compromised immune systems.”

Because he has almost no ability to produce antibodies, Idan cannot come into contact with germs. He has an extended family and cousins his own age in Israel and the United States, but he has never met them, as an ordinary cold could be a death sentence.

The Zablockis are no strangers to medical hardship. Eight years ago, Akiva Zablocki was diagnosed with a brain stem tumor that doctors deemed inoperable. Refusing to give up hope, he looked for a doctor who would operate.

A brain surgeon in Arizona proved to be the answer and saved his life, removing the tumor entirely. Though he sometimes has to wear an eye patch, he has regained his quality of life.

His son’s condition “makes my brain surgery look like a paper cut.,” Akiva Zablocki said .”But [he] is strong, and I think he’ll overcome it.”

People with Hyper IgM have three options: They can do nothing, which condemns them to death in their mid-20s from cancers and opportunistic infections; they can use intravenous immunoglobulin, the blood plasma replacement therapy that Idan currently undergoes once a week, or they can have a bone marrow transplant.

After consulting with doctors and medical professionals in England, Canada, Israel and all over the United States, the Zablockis have finally made their decision: They are making Seattle their temporary home as Idan undergoes treatment at Seattle Children’s Hospital, where both bone marrow transplants and Hyper IgM were discovered. He is lucky: Four potential donors have already been identified.

The Zablockis chose Seattle because doctors there use a drug called Treosulfan as part of the chemotherapy that will wipe out their son’s original immune system. Though still not FDA approved for general use, it is being used in clinical trials. The drug is believed to reduce the three fatal complications of bone marrow transplants: complications from chemotherapy, infections and graft-versus-host disease.

“We want to choose the [option] that gives him the best chance of long-term survival with the least complications,” his mother explained. “With a bone marrow transplant, there’s a chance for a complete cure. It takes one to two years to fully recover, but if it’s successful, then he’s a perfectly normal child and he grows just as any other person does.”

But all this comes at a cost. The hospital estimates the medical bill will be between $600,000 and $1,000,000. Akiva Zablocki, who takes care of Idan full time, doesn’t work. His wife is a lawyer, but she will have to take six months of unpaid leave in order to be with her son.

To alleviate some of the costs not covered by their insurance, the Zablockis have launched an online fundraising campaign, and what started as a couple of Facebook posts and emails to friends has turned into a strong network of support: They have raised $124,507 toward their $250,000 goal, with 117 days left to go.

“The response has been amazing,” Akiva Zablocki, said. “Overall, we don’t know the majority of the people donating to the campaign. We sent it to a few friends on Facebook and email, and a lot of people have been sharing it, sending out emails to their congregations. It was very scary for us; we didn’t know how we were going to deal with this.”

“People are praying for Idan,” his wife added. “People we’ve never met. It’s been a very powerful experience.” The Zablockis acknowledged the efforts by Jewish communities in New York and abroad, saying they have been an incredible asset.

“One of the things that has been extremely touching for us has been the large volume of emails from the Jewish community offering to bring us meals, to help, to baby-sit,” Amanda Zablocki said.

“Just the overwhelming response of ‘We’re with you,’ ‘We’re there,’ ‘What do you need?’ We’re trying to draw strength from where we can, and we’re definitely drawing strength from the Jewish community, from New York and all over the world.”

As for little Idan? Well, his name says it all. “Idan means ‘era’ [in Hebrew], like ‘time,’” his mother said. “It’s from the Bible. We were opening up a new era with Idan. For me, the association between era and time, time being so precious and yet so powerful, there’s something very meaningful in that. Idan is very strong, but he’s very precious.”

Contact Anne Cohen at cohen@forward.com

Read more: https://forward.com/news/181861/jewish-babys-rare-immune-disorder-attracts-global/