Talia Hill, 11, was born with cerebral palsy, epilepsy and bone deformities. She is hearing impaired, speech impaired, mobility impaired, fine-motor impaired and neither her two arms nor her two legs are the same length. In her short life, she has had multiple surgeries, a hearing aid and has had to take several kinds of medication on a regular basis.
"We have significant issues in every area," said Talia’s father, Danny Hill. "We spend a lot of time agonizing about what decisions to make for her, because we are not experts," he said. "The challenges are endless."
But one of the greatest challenges facing the Hills, who have two other daughters, is giving Talia a normal childhood. "We spent the first couple of years in hospitals," said Leah Hill, Talia’s mother. "And when you have a kid that has all these issues you never know when something is going to flare up, or how serious it might be. I felt so bad for our carpool people, because I was always had to call to say I can’t pick up carpool because I was at the doctors’ office or at the hospital. You are constantly imposing on somebody, and even if it is family, it is such an awful feeling to always be taking like that."
Which is why the Hills felt so relieved when Chai Lifeline came into their lives and offered them much-needed support without asking for anything in return. A social services organization that helps families with pediatric illnesses, Chai Lifeline took the Hills and other families to Boomers amusement park in Irvine during chol hamoed Sukkot.
On this sunny Wednesday, Sept. 25, Jewish music blared out of the park’s speaker system, sukkot were set up around the park to eat in and kosher food was sold from kiosks. All over the park, attentive volunteer counselors tended to children in wheelchairs playing arcade games, while other children afflicted with congenital illnesses tore around in bumper cars, rode ponies, and climbed the rock wall.
"We try to bring the kids to these events so that they can be around other families and other situations and connect with them," Leah Hill said. "They get to see that it’s not just our family that is different, and Talia sees that there are other junior high girls going through similar things."
Started in 1986 by Rabbi Simcha Scholar of Brooklyn, N.Y., Chai Lifeline opened its West Coast branch three years ago. Scholar had been a teacher and a community rabbi, and in his years of community service he saw how devastatingly pediatric illness affected families. "I really saw the pain of families when dealing with a sick child," said Scholar in a phone interview. "There was a compelling need in the Jewish community to normalize a sick child’s life."
Chai Lifeline now assists 3,000 families around the world, and 120 families on the West Coast. Their programs, which are available to Jews of all affiliations, are free, and include home childcare, tutors, transportation, support groups, individual counseling, family retreats, family fun days at amusement parks, art therapy programs for ill children and their siblings, homework buddies and insurance advocates.
"Their philosophy is that the family has a tough time, and they want to make it nicer for the family," said Danny Hill. "They don’t just focus on the kid with the disability, they focus on the whole family."
"Chai Lifeline is wonderful," said Debbie Gordon of Valley Village, the mother of two teenage boys with Familial Dysautonomia, a rare genetic disorder of the autonomic nervous system that primarily affects people of Eastern European Jewish descent. "We are not Orthodox, and they haven’t looked down on us that we are not. They just treat us like human beings."
"They have been a godsend," said Lainie Sugarman of Pacific Palisades, the mother of Alon Sugarman, 11, who has Ewing’s Sarcoma, a malignant tumor that occurs in the tissue. "We were one of their first families [to use the program] in Los Angeles, and it was the first time that someone had said to us, ‘What can we do for you?’ I said Alon needs visitors, and so Randy Grossman [the West Coast regional director of Chai Lifeline] had some volunteers come and visit him."
Every summer, Chai Lifeline runs two camps in New York, Camp Simcha and Camp Simcha Special. Camp Simcha is for children with cancer and blood disorders and Camp Simcha Special is for children with medical and chronic disorders. At Camp Simcha and Camp Simcha Special, the children enjoy a normal camp atmosphere, while all their medical needs are taken care of. There is a 1-to-1 camper to counselor ratio, and the children are taken on rafting trips, motorcycle and helicopter rides and riverboat cruises. There is also a video game arcade, canteen and soda machines. The children are allowed to order anything they want from the camp kitchen and — best of all — everything, including transportation to and from the camper’s home city, is free to the campers.
Scholar estimates that it costs Chai Lifeline approximately $10,000 per child to send them to Camp Simcha. "We spoil them with a lot of love and candy," he said. "We shower them with love."
There are approximately 15 Los Angeles-area children who attend Camp Simcha and Camp Simcha Special every year. "I loved it," said Alon Sugarman. "You could go to the canteen and say you wanted Now and Laters and potato chips, and you would get Now and Laters and potato chips. It was really, really fun."
For parents of children with pediatric illness, Camp Simcha offers them much needed respite as well. "Chai Lifeline also provided me with a rest while the boys were away at camp," said Gordon, whose two boys require a feeding tube to eat. "I’ve never had a night — unless the boys were in the hospital — where I didn’t have to hook them up to their pumps; it was nice not having to do that…. Also, since coming back from camp, my boys have received calls from their counselors who are now in Israel, and they received letters from counselors in England. It is really a compassionate and caring organization."
In fact, Camp Simcha’s reputation is so esteemed that counselor positions have become one of the most coveted and hard-to-get summer jobs in the Orthodox world. "Everyone you speak to who comes out of there says it was a life-changing experience" said Ari Adlerstein, 18, from the Fairfax area, who was a counselor at Camp Simcha Special this past summer.
"Before I went to camp, I thought these kids were different than me, and I had no connection to them. Now when I see a kid in a wheelchair, I don’t look at him so strangely anymore. I will think he is a great kid just like any other kid."
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