Jewish Baby's Rare Immune Disorder Attracts Global Sympathy — and Support

Couple Raise $100K to Fight Son's Hyper IgM Syndrome

Battle for Life: Little Idan Zablocki suffers from an immune-deficiency disorder that affects 1 in 500,000 people. It can be a death sentence but his family is fighting back with the help of the community.
courtesy of Zablocki family
Battle for Life: Little Idan Zablocki suffers from an immune-deficiency disorder that affects 1 in 500,000 people. It can be a death sentence but his family is fighting back with the help of the community.

By Anne Cohen

Published August 07, 2013.

(page 2 of 3)

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.”



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