When doctors told Jon Singer that his daughter may never walk, he wasn't about to give up without a fight.
"I was driven," said the Tenafly resident. "When you get that feeling in your gut that something's wrong, [you] really can't just take no for an answer."
His daughter, Rebecca, was about 1 year old when doctors diagnosed her with Phelan-McDermid Syndrome - a rare genetic disorder in which missing chromosomes cause autism-like behaviors.
About 300 families worldwide have had a child born with the syndrome, said Barbara Cruz, associate director of the Florida based Phelan-McDermid Syndrome Foundation. The number could potentially be larger than this, as the disorder can easily be mistaken for autism.
"[For] a lot of kids that have been diagnosed with the autism, if they had genetic testing, it could possibly show that they have Phelan-McDermid Syndrome," Cruz said.
At the time of Rebecca's diagnosis, the disorder was even more uncommon, with approximately 30 families worldwide affected.
When Jon first brought Rebecca to have her condition examined, there was fear that she would never gain motor functions or intelligible cognitive reasoning.
"One of the first geneticists we saw said to us, 'If you ever have any hope for your daughter to have the type of intelligence you have, or [for her to] even walk, you should put that aside,'" Jon recalled.
Although things seemed dismal at first, Rebecca's fate would not be so bleak. Rebecca, who is now 16, went from being told she would never walk to an active young women who involves herself in a number of activities.
"This kid that they thought might not even walk now skis, roller blades, rides a bike, swims and is doing all sorts of other things," Jon said.
Although Rebecca has made progress over the years, Jon was still determined to make sure his daughter would be able to live an independent life in the future.
This desire was soon answered when a new clinical trial to help those with Phelan-McDermid Syndrome began this year at The Mount Sinai Hospital in New York City.
Researchers found that after treating mice with a growth hormone for a couple of weeks, cells started going back to make regular connections, a huge breakthrough for those who have the disorder.
"Just the fact we were having something so incredibly rare [being studied], that someone even cares about this was unbelievable, especially since it's right in our backyard," Jon said. Because of Tenafly's close proximity to New York, Rebecca was one of the first people selected for the initial trial group in January.
However, before Rebecca was admitted into the program, a few clearance tests needed to be run to ensure that her growth plates had not yet infused, as Rebecca was almost 16 at the time. If they were closed, it would be too dangerous for her to take part in the trail program.
About four days after Rebecca was admitted in the program, the Singer family received some bad news.
Rebecca's growth plates were completely infused and she would no longer be able to participate.
"You can imagine my wife was devastated, up all night crying," said Jon. "Our 12-year-old Sam was beside himself."
Although the family was heart-broken by this news, Jon wasn't deterred.
He reached out to other doctors, including one who was a colleague of the consultant who told the family Rebecca was not eligible for the trial program.
Soon, Jon's efforts would eventually payoff.
About a week and a half later, doctors determined that Rebecca's growth plates did not infuse - leaving more room for growth. It turns out that the original consultant had made his diagnosis while looking at the X-ray on an iPhone - not the actual X-ray itself. After Rebecca was accepted into the trial program in March, she would become part of a double-blind study. She receives two shots a day, not knowing if it is the placebo or the growth hormone, which her mom administers.
"I'm a big baby," said Jon, with a laugh. "I can travel cross country, I can go to moon, but I can't give my daughter a shot."
Although Jon is hoping for positive results from the trial, he is making sure to keep his expectations in check.
"I'm very excited, but I'm not getting my hopes up," said Jon. "Often times they can get great results in curing cancer in mice, but that always don't always translate to people [for example]."
In addition to dealing with the adversity of getting his daughter into the trial program, Jon was also faced with another roadblock over the years: being able to get Rebecca into a good school.
Although New Jersey is known for having a lot of non-profit schools for those with special needs, the wait list is extremely long. With all local schools filled, Rebecca was placed in a county program that simply did not have the resources to provide a quality education, Jon said.
When Jon asked these schools' administrations about raising money to build additional wings to accommodate more special need students, they gave him a better idea: build a school of his own.
"[They said to me] 'if you could help start another school, you would alleviate some stress for other families,'" said Jon. "[Special need schools] generally end up accommodating about 30 or 40 families, so you would help that many more families."
Jon and Rebecca would soon embark on a cross country road trip called "Drive4Rebecca" in 2002 to raise the funds to open an autism school in the local community.
"I came up with the 'Drive4Rebecca'" because I wanted to give a face and a name [for people to relate to], rather that it be the drive for autism," Jon said.
The Singers would venture to many Whole Foods in different states to sponsor events, eventually raising $85,000 in total. Sixty thousand dollars went toward the creation of a new school, while $25,000 went to help various autism organizations across New Jersey, including the Alpine Learning Group, the Institute for Educational Achievement and Princeton Child Development Institute Program.
A year later, Jon and five other families founded The REED Academy - a non-profit school in Oakland that focuses on autism. The school has a particular focus on providing students, who range from ages 3 to 21, with the skills they need to lead independent lives.
"When Rebecca got in [to REED Academy] and school started, it was like night and day," said Jon. "She made more progress in REED Academy in three months than she made in three years [at the county school]."
The 2002 drive would not be the only time the Singers would take to the road to help support those with autism. In 2011, Jon and Rebecca held another cross country tour as a form of advocacy to help increase the understanding and importance of kids with special needs. The Singers made stops in Apple stores to educate people how new technologies can help make learning easier for those who have special needs.
"Rebecca started using an iPad for learning and leisure," said Jon. "It's amazing technology."
Jon will compile his experiences helping his daughter and those like her in "Driven," a self published book that was recently funded through Kickstarter - a crowd funding website where supporters of a project donate money until it reaches a certain goal.
Not only will it detail Jon's tale, but will focus on others in the community who are "driven" to overcome personal challenges, including the story of Garet Hil, a father who started a national organ foundation after his daughter was in need of a kidney transplant.
"Many people might fight for their own kid and stop there, but he decided to transform the whole industry," said Jon. "It's not just examples of me [or] what I do for my daughter, but there's a lot of great people that do these sort of things."
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