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November 06, 2015

Four N.J. siblings struggle to cope with genetic mystery illness

Doctors still searching for diagnosis to explain Teaneck siblings' immobility

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110515_Herzfelds Contributed Art/GoFundMe

Tzvi and Racheli Herzfeld enjoy a day at the beach. Both suffer from a rare genetic disorder that causes loss of strength and muscle coordination.

For the Herzfelds, a Jewish family from Teaneck, New Jersey, life has become an incredible challenge over the past 12 years.

Esther and Arthur Herzfeld have witnessed each of their children, ages 16 to 23, gradually lose their mobility to a mysterious subset of muscular dystrophy that doctors have struggled to diagnose, People reports.

Beginning in 2004, the Herzfeld's second oldest daughter, Tziporah, began tripping and falling to the ground without any apparent explanation. She also developed a burdensome gait. Doctors initially suspected that Tziporah had a rare genetic nerve disorder, Charcot-Marie-Tooth (CMT) disease, which affects just one in 2,500 Americans. That diagnosis proved to be inexact.

For several years, it was only Tziporah who showed symptoms, but then Tzvi, their 18-year-old son, began to fall and lose his mobility. He's now confined to a motorized wheelchair. As early as elementary school, the youngest daughter, 15-year-old Rivka, struggled to climb the steps of the bus. She has also been confined to a motorized wheelchair.

The final shock came when the Herzfelds' oldest daughter, 16-year-old Racheli, called home while she was traveling during a gap year. She reported the telltale sign, a loss of strength and coordination, and not long since the onset of symptoms she's been limited to walking short distances.

The family's story, however, has journied around the world, with a Mobility Awareness Month campaign reaching as far as Brazil, Guatemala, Cuba, and Israel, as well as across the U.S., the Jerusalem Post reports. 

Still, Esther and Arthur, a teacher and a jeweler, have struggled to come to terms with an unidentified genetic illness that does not physically affect them, yet has taken so much from the lives of their children.

Despite an endless string of tests and medical debt surpassing $100,000, the family is still without an answer.

There are no answers – that's the worst part," said Arthur. "Each time our kids are put through a new test, the doctor comes back and says, 'We don't know.' It's the most helpless feeling that you can imagine."

Though the family never wanted to have to seek out help from the community, their story has been met with tremendous support and encouragement around the world. They have been hoping to raise enough money to defray medical expenses and purchase a wheelchair accessible van – $70,000-$80,000 – which is not covered by insurance.

The Herzfeld Family Fund, created on GoFundMe, has raised over $7,000 of a $150,000 goal during a five-month period.

Meanwhile, the four siblings live at home with their parents, where their condition requires assistance from their parents for tasks as essential as getting out of bed and bathing. Rivka, a recent Bible Studies graduate, explained to People how she reconciles the situation. 

"I do wonder sometimes why we have this. But at the same time, I think, 'Why not us?'" Rivka said. "These are not really questions we can answer. We're doing everything in our power to cope with this, live our lives and just be supportive of each other."

Doctors who have followed the family note that all four siblings have come up negative for common neuromuscular disorders. The next step will be to begin exploring other possible conditions.

You can support the Herzfelds at their GoFundMe page here.

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