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Chappaqua Girl Raising $1M To Help Fight Nervous-System Disorder

Zoe Gellert of Chappaqua, who suffers from a rare enurological disorder brought on by a foot injury, is raising money to raise awareness about, and to conduct research on, Chronic Regional Pain Syndrome.
Zoe Gellert of Chappaqua, who suffers from a rare enurological disorder brought on by a foot injury, is raising money to raise awareness about, and to conduct research on, Chronic Regional Pain Syndrome. Photo Credit: GoFundMe.com screen shot

CHAPPAQUA, N.Y. -- A Chappaqua girl who was stricken with a rare neurological disorder last year after suffering a foot injury is fighting to raise $1 million to help other children trapped by similarly painful situations.

In a post and video on GoFundMe.com, Zoe Gellert says she was just a typical, athletic 11-year-old when she woke up one morning last February.

Just hours later, however, she was unwillingly launched on a medical journey that would take her from specialist to specialist searching for a cause of her intractable pain.

Zoe was walking with friends when a 40-pound paving stone fell on, and crushed, her foot.

What happened next was somewhat of a blue, but Zoe remembers being rushed to the school nurse and then taken home.

She couldn’t put any pressure on the injured foot, so her dad bought her a pair of crutches which she used to hobble to school on the next day.

Despite X-rays and MRIs, the pre-teen couldn’t get a solid diagnosis. Getting looks of sympathy and having to tell her story over and over again just made things worse, she said.

When spring break finally came, she still couldn’t move her foot. The last straw was still not being able to walk on her birthday.

The pain seemed all out of proportion to the original injury, Zoe said. Sometimes it was so bad she couldn’t get out of bed and would cry if the slightest breeze touched her foot.

Finally, one of her physical therapists suggested going to a pain specialist.

She knew something was up when the doctor left the examining room with her father and then they both came back looking, Zoe recalled, “all sad and sympathetic.”

The doctor told Zoe she had Complex Regional Pain Syndrome, a rare, chronic and sometimes progressive condition that causes burning pain, inflammation and changes in the skin.

As hard as that was to hear, she said, she was relieved to finally know what was wrong.

“They scared me. A lot. I felt like I was never going to be normal again, never going run again or play soccer and other sports,” Zoe said, adding: “I didn't want to lose that.”

She also loves basketball, tennis and dancing.

Other doctors, including a psychologist, confirmed the diagnosis. She was briefly hospitalized so she could receive a number of therapies without having to run around from doctor to doctor.

After being admitted to the Rusk Institute of Rehabilitative Medicine at New York University, started to make progress. She went from two crutches to one. And after nearly a month of "grueling" exercises, she was able to walk out of the hospital "with a small limp" and no crutches.

The pain lingered, but with more physical therapy, Zoe was able to return to playing her favorite sport, soccer.

Zoe was always active and into creative things.

Just a few months before the accident she had competed with other kid chefs on the Food Network show, “Chopped Junior,” according to Westchester Magazine. And later, despite being in pain, she was able to accompany classmates on a trip to the American Museum of Natural History in New York City.

Her latest goal in life is to help others by raising money for pediatric CRPS awareness and research.

Her GoFundMe campaign, which was set up by her mom, Lauren Pollack Gellert, has so far raised $21,980 of a $1 million goal.

Zoe said she has learned a lot in the past year, but the most important thing is that “kids in pain need to be diagnosed fast, they need to stay functional and engaged in their everyday life.”

Knowing that not enough nurses and doctors are familiar with CRPS, Zoe said she hopes her online campaign will help change all that. Part of the money will be used to create informational materials that will be distributed at pediatricians' offices.

To contribute to the campaign or view a video about Zoe’s story, click here.

For more information about CRPS, click here.

To read the Westchester Magazine story, click here.

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