HACKENSACK, N.J.— Seventeen-year-old Rebecca Singer is moving out this month, leaving for a school in the hills of Pennsylvania.
“I’ve never been so sad about anything in my entire life,” said her father, Jon Singer.
Rebecca has disabilities caused by a genetic abnormality and severe autism. After years of therapy and special classes, the Tenafly, N.J., teen entered a clinical trial last year of a drug that her parents prayed would ease her symptoms — and provide hope to other children with autism.
For Rebecca, it was not enough. The teen, who cannot speak, still hasn’t mastered daily living tasks, such as feeding and bathing herself — basic skills she will need if she is ever to live in a group home when she is older, her parents said.
Next month, she will be moving out of the only home she has ever known to a residential facility west of Philadelphia that the Singers hope can help her.
Her parents are devastated. But like many parents of severely disabled children, they say they have few options.
“Rebecca is getting older and caring for her is more challenging,” Singer said. “She has the needs of an infant and has to have someone beside her all the time. We just didn’t think it would happen so soon.”
Rebecca has a rare genetic disease, Phelan-McDermid syndrome, which causes severe disabilities and often autism. She can’t speak, feed or go to the bathroom by herself and is unable to understand basic directions. She frequently trips while walking and chokes when eating. But she can swim, roller blade with assistance, and ride a bike with training wheels.
Just last summer, Singer and his wife, Michey, were holding out hope that some of Rebecca’s symptoms would ease. Rebecca participated in a clinical trial at Mount Sinai School of Medicine where she was given the growth hormone, IGF-1. It had been shown to reverse autism symptoms in mice and researchers hoped it would produce similar results in humans.
It fell short for Rebecca, though Singer said his daughter does seem calmer.
“We can take her out to restaurants or people’s houses that she doesn’t know and she’ll just sit quietly — she never did that before,” he said. “But I don’t know if that’s from the hormone or she’s just maturing.”
Dr. Alex Kolevzon, one of the physicians working on the study and the pediatrics clinical director at the Seaver Autism Center at Mount Sinai, said the results haven’t been analyzed yet because 18 other children will participate in a second phase of the study. Rebecca was one of nine involved in the first phase.
“At this point, we do know about the safety of the drug — that it was tolerated well and parents were able to administer it, but we don’t know how effective it was,” Kolevzon said.
When asked about Singer’s comment on Rebecca’s calmer demeanor, he responded, “We also don’t know if it’s from treatment or function of time, but that observation is consistent with other parents’ comments made over the course of the study.”
A separate arm of the trial did initially show some positive changes, said Elizabeth Torres, an assistant professor who leads a psychology research team at Rutgers University. The group created avatar-like images for each patient to determine if their gait or other movements were improved from the hormone. Torres said preliminary results show that two of the other children in the study had better coordination, though she, too, said the changes could be attributed to natural aging. She did notice a remarkable difference in Rebecca’s disposition.
“The first session she was screaming and crying so badly we couldn’t really do anything,” Torres said. “The other three times she just sat there and allowed us to do what we needed to do. I don’t know if it was the drugs or not — I do know sometimes it takes a while for the drugs to kick in.”
Though Rebecca did not make any significant breakthroughs during or after the trial, Torres said one 8-year-old child who normally spoke only gibberish looked at his father one day and asked, “Can I take this home?” referring to the markers and papers he had been using.
“The father was beyond himself,” Torres said. “Then when they went to the car, the boy told his father to ‘Put them this way’ so he could see the papers on the ride home. We were all pretty shocked. These children understand a lot more of what we’re saying than we think. They’re just waiting to be unlocked.”
“She really needs to be working on these things 24/7 and she can’t do that at home,” Singer said. “Once we learned she needs to be able to do this, we realized we don’t have much time left. She’ll be out of the school system when she’s 21 and then she’ll never have the opportunity to learn how to do these things.”
Local school districts are required to provide an appropriate education for every child and experts who have been working with Rebecca said this means a 24-hour facility, Singer said. The tuition for Reed Academy and the hourly wages paid to aides for Rebecca after school currently cost the district $143,000 a year, he said.
After visiting several schools, the Singers’ first choice was the Center for Discovery, in Harris, N.Y. But because of the $350,000 annual cost, they found another home and developed a plan that will cost about $160,000 a year: Camp Hill Special School in Glenmoore, Pa., for 10 months plus Camp HASC in Pennsylvania for the remaining two months, with aides to help when Rebecca is home for visits, Singer said.
Last month, the Board of Education approved the plan to pay for Rebecca’s education in Pennsylvania as well as her camp and aides when she is at home.
Rebecca is scheduled to leave for school on Monday.
“It’s the best plan for everyone but when parents with children her age are getting ready to send their kids to college, I’m praying my non-verbal daughter won’t be sexually assaulted,” Singer said. “Because she’ll never be able to tell me,” he said as his voice caught in his throat.