From the moment she typed her infant son’s symptoms into a Google search and correctly guessed that he had a rare genetic disease called familial dysautonomia (FD), Robin Fiddle Posnack of New City has poured her heart and soul into providing her child not only with physical care but also with socialization.
Friends are not a given for a 13-year-old boy who, despite his sunny disposition and normal intellect, cannot run, eats and drinks through a tube, and copes with myriad symptoms of the progressive neurogenetic disorder that causes malfunction of his autonomic and sensory nervous systems.
“There are only 350 people alive in the world with this disease, and only three others in Rockland County,” Ms. Posnack said.
Every summer since he was 6, Jack has spent two weeks at Camp Simcha. It’s a kosher sleepaway camp run by Chai Lifeline, an international nonprofit organization that provides services for Jewish children with life-threatening and chronic illness.
Counselors there lovingly nicknamed the little boy “Jack Attack,” and made him a member of the camp band, where he plays guitar. Ms. Posnack always sends her son to camp with a pile of Jack Attack T-shirts printed in different colors. She still chokes up when she recalls how one counselor called to tell them he was wearing his Jack Attack T-shirt on a visit to Jerusalem’s Western Wall.
So Jack has his camp friends. But his social circle widened exponentially about three years ago, when he started playing online games; his favorites now are Fortnite and Madden NFL. Gaming turned out to be an effective vehicle for leveling the playing field and enabling Jack to forge friendships near and far.
“Every Sunday, local kids he’s met in the virtual world come over to have game night with him,” Ms. Posnack reported. “That includes groups from the Jewish Community Center, Boy Scouts, football and tennis players; people of all ages, colors, and orientations. We had an autistic girl come over, and her mother was crying, because this child has never been part of any group before.”
As part of the celebration of his bar mitzvah in January, Jack decided to raise money to give a gaming system to a child with disabilities who was suffering from social exclusion. Children can send in their stories for consideration via a website Ms. Posnack set up: JackAttackLTPF www.jackattackltpf.com/ LTPF stands for “level the playing field.” (They also can email letters to firstname.lastname@example.org)
“One little boy wrote to us that he can’t go outside without a mask, and he gets bullied,” Ms. Posnack said.
“In August, just before camp, Jack and I will decide on which child to buy a gaming system for, and if possible, Jack will hand deliver it.”
The prize includes a gaming console, microphone, and green screen, which costs around $5,000.
Ms. Posnack has formed a board and co-founded a nonprofit organization, soon to get 501(c)(3) tax-exempt status, in order to accept donations and sponsorships to help Jack achieve this not-inexpensive goal. She and her son hope to raise enough money to buy gaming systems for more than one winner.
This was not the only channel through which the seventh grader marked his religious coming of age. He had two synagogue ceremonies, as well as a party at Space in Englewood.
“We live in both a religious and a secular world,” Ms. Posnack explained. “Jack even has chasidic friends because of Camp Simcha. Camp Simcha and Chai Lifeline are a big part of our lives.”
Jack was treated to an Orthodox bar mitzvah in Monsey courtesy of Chai Lifeline. Two weeks later, on January 18, he was called to the Torah before a standing-room-only crowd at Temple Beth Sholom, a Reform congregation in New City.
“The rabbi, Brian Leiken, came to our house every week to work with Jack until he had memorized his whole reading,” Ms. Posnack said.
His 11-year-old twin brother and sister, Hunter and Charlotte, surrounded Jack at these special occasions, and so did his 18-year-old brother, Cody. Tragically, his father, Adam, died in July 2014. He was 47.
Still, Ms. Posnack said, “I have faith in God. I’m not sure why He took Adam but now I have to be a strong advocate for my son. Before, I was the softie.”
Although a nurse accompanies Jack to Felix Festa Middle School, and he has home nursing care for several more hours on weekdays, his mother is his caregiver the rest of the time. In between, she runs her own business, Twin Computer Training.
Ms. Posnack also finds opportunities to speak to Jewish groups about the importance of genetic testing for FD, which affects primarily Ashkenazi Jews when both parents are carriers. She had a genetic screening in 2000 but FD wasn’t added to the test panel until 2001.
“You need to retest before each pregnancy because there are always things added to the Ashkenazi panel,” she said. “It’s my mission to educate Jewish young people to get tested not only when they’re young. I feel like I’m saving lives in that way.”
It is not clear what the future will bring for Jack, who was born a month premature on December 7, 2005.
According to the Familial Dysautonomia Foundation, “Currently, the mean age of the FD population is approximately 15 years. By statistical projection, babies born with FD in 2006 have a 50 percent chance of surviving to 40 years of age.”
That projection is mainly due to better medical options for treating FD symptoms, which include insensitivity to pain, unstable blood pressure and body temperature, absence or overflow of tears, frequent pneumonia, and poor growth.
“I don’t know if there’s a cure in sight, as I hoped there would be by now,” Ms. Posnack said. “But I do know that with online gaming Jack is having a ball and he’s connecting with people.
“Jack Attack doesn’t take one second for granted, and he is living proof that having friends makes a difference and gives life a special purpose.”