Jul 28, 2014
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Very Peri

Twelve-year-old Peri Finkelstein of West Hempstead isn't letting a disability stop her from succeeding.

Very Peri Very Peri

Chances are everyone reading this article took a shower this morning without any difficulty. They brushed their teeth, and they dressed themselves, without incident.

Peri Finkelstein, 12, cannot do any of these things without assistance from her mother. The West Hempstead girl was born with nemaline rod myopathy, a form of muscular dystrophy. She's in a wheelchair and breathes with the use of a ventilator.

But nemaline rod myopathy or not, the seventh grader made honor roll every quarter last year. The year before, she won the excellence award for her class at graduation.

Much of Peri's young life has included medical emergencies and hospital stays that last for months. By the time she was 2, she had both CPR and the Heimlich maneuver performed on her twice, including by her father, Paul.

"Sometimes I have flashbacks of them cutting her dress open in the ER and pounding on her," said her mother, Lori.

Many children born with this condition don't survive past the age of 7. Miraculously, Peri has survived one muscle biopsy (at 9 months old), about 25 sets of ear tubes, more than a dozen bronchostopies, a tracheotomy, the removal of her tonsils and adenoids, a broken femur, two broken tibiae and eight scoliosis surgeries, which give her the potential of living without the use of a ventilator.

"My older kids ... their entire childhood was shaped by Peri," said Lori of Peri’s siblings, Katy, 20, and Joel, 17.

The medical emergencies and prolonged hospital stays prevented them from participating in the usual family activities. Early on, a fraction of the family would go to affairs they were all invited to, but eventually they decided they either all go together or they don't go at all.

"When she was in the hospital, we were all in the hospital," said Katy, a third-year art history major at Stony Brook University.

"Physically [and] medically, Peri's obstacles were immense," Lori said. But one early piece of advice she and her husband took heed to was to "maximize her potential."

"So we've always been very positive with Peri, we haven't said, 'she's never going to do this’ ... We always assume she can do it," Lori said.

Peri knew she was different from about second grade. "At first I thought I was weird and … I wasn't going to have any friends, but then I realized as I got older, you can overcome anything if you put your heart all out," she said.

Peri has participated in Girl Scouts, one year selling more than 1,000 boxes of cookies, making her a top Nassau County seller. By giving customers the option to donate their purchases, she collected 200 boxes for patients in the Child Life Program of Winthrop-University Hospital in Mineola.

Through her schools and synagogue, Peri has spearheaded toy drives for other special needs children including one at her bat mitzvah for Winthrop patients. 

Her condition cannot even stop Peri from dancing. For years, she took classes with Dancing Dreams, which gives ballet lessons to special needs children, pairing them with "a helper who'll hold her and be her legs," Lori explained.

Peri even "danced" on CBS News' The Early Show in 2008. And last year, the California-based charity When U Dream A Dream arranged for her to meet New York City Ballet dancers from The Nutcracker at Lincoln Center.

Not everyone has been supportive of Peri and her family though. Up until recently, the Finkelsteins’ home was not conducive to Peri's needs -- her bathroom was so small the ventilator couldn't fit inside – so they decided to build an extension onto the house. It would give her a more spacious bedroom with a larger, adjoining bathroom, enabling her to be more independent.

To do this, the Finkelsteins had to extend their home 11 feet more than the law allowed, so they needed to apply for a variance with the Town of Hempstead and inform their neighbors about it. Nearly all of them protested, including some who spoke up before the zoning board, but Peri and her family pled their case and prevailed.

Lori never lost her sense of humor though. Joking about the situation, she says one of her neighbors "will burn both a cross and a Jewish star on my lawn when she reads this article."

The family has not lost sight of how fortunate they are either. To give back to one organization that has helped them over the years, each January, the Finkelsteins run a half marathon together in Miami, while raising funds for  Chai Lifeline, an international Jewish organization that supports sick children and their families.

The charity’s volunteers have been by their side during Peri’s hospital stays, and runs a two-week camp for children with enormous medical needs that Peri attends each summer and absolutely loves.

This will be the fourth year the family will run the 13.1 mile course. Last year, Peri, who was pushed by Lori in a jogging stroller, completed the race for the first time and received a medal.

" Team Finkelstein" depends on  sponsors to raise at least the minimum amount of money required to participate. Since their team is larger this year, the goal is $18,000.

As for Peri's future, she's thinking about a career in fashion. (She owns a large collection of headbands, which is her trademark accessory).

"She can do anything she wants to do," Lori said, adding that her daughter has "a lawyer's mind." With her never-waning sense of humor, she joked, "It would be a waste if she didn't use her mind to do devious and evil things one day."

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