Tommy. Taylor. Rebecca. They are three ordinary names. They are also three extraordinary stories of hope, conviction and love, with a dash of swagger thrown in to cope with the daily challenges and the skeptics.
The Everts, Matthews and Newman families share these character traits, as they dare—one day at a time, one small step at a time—to believe that their families can help change the world. They have become advocates and activists; raised money and awareness; and started and run nonprofits. They are transforming difficult situations into opportunities to help others.
Here are their stories.
The Everts Family
The Everts’ story begins at Beginnings, the Franklin & Marshall orientation program for incoming first-year students, where the two met. But the story of their lives starts in spring 2002, when their three-year-old son Tommy received the diagnosis of PDD-NOS, or pervasive developmental disorder not otherwise specified, on the autistic spectrum.
“It was not an easy time,” says Rich, who works for Columbia University’s School of Public Health doing their Web work. The young couple, who had Tommy while they were still at F&M, had finally settled into a routine, with Sugey at Temple Law School and Rich working in IT at a local company.
Now they had a new set of challenges they felt ill-prepared to handle. “We didn’t know what autism really was at the time,” Sugey says. They knew prior to the diagnosis that something was amiss when their once-happy and affectionate son became withdrawn and his language skills regressed. But the prognosis that Tommy would not improve much from his current state overwhelmed them.
“Being young, we listened to and believed everything the doctors told us at first,” Sugey says. “But as time went on, we realized we needed to be the ones to figure out what was best for our son. We needed to be his advocate.”
So they learned everything they could by scouring magazines, books and the Web. Based on their research, they used special diets, tried biomedical techniques, explored alternative approaches and peppered their doctors with questions.
They experienced a minor breakthrough while attending a start-up session for the Son-Rise Program at the Autism Treatment Center of America. The program, which offers strategies for implementing a high-energy, one-on-one, home-based program, sounded like something Tommy would respond to. But as much as they tried to find the necessary volunteers, they couldn’t.
Sugey completed law school but decided not to pursue a legal career, so she could spend more time with Tommy. She is now an admissions counselor at F&M. Rich continued at his full-time job and worked to start their own business.
But the couple was having a tough time financially. “Medications, doctor’s appointments, special foods. There were expenses at every turn,” Sugey says. “Then Rich lost his job.”
Over the next two years, Rich worked seven jobs, doing everything from selling caskets to retail work. To make ends meet, the couple sold everything of value, including computers, DVDs and even Sugey’s engagement ring. For Christmas 2004 they gave each other tea light candles and a promise to stay together and make it through.
“We had seen how autism destroyed many families. We were determined not to let that happen to us,” Rich says.
Having experienced firsthand the fear, isolation and anxiety associated with raising a child with autism, Rich and Sugey wanted to reach out to others. In January 2005 they established the Tommy Foundation (tommyland.org). The organization’s mission is to educate and serve the community in dealing with autism through awareness, development, research and training.
When their finances stabilized in the spring as their business started to take off and Rich found a new job, they renewed efforts to bring the Son-Rise Program to Lancaster. They found a few volunteers to work with Tommy, but it was intermittent at best.
As his program slowed, Tommy regressed. So Rich and Sugey looked for a more permanent flow of volunteers. They contacted the F&M administration, which allowed them to contact almost 1,500 students. The foundation quickly received 50 inquiries, half of whom qualified as volunteers.
Tommy now has a full schedule of volunteers and shows a marked improvement in his eye contact and attention span. He’s also starting to talk.
As Tommy has progressed, so has the foundation. In April 2007 it hosted the Edge of Autism Symposium at F&M and drew nearly 300 attendees. In fall 2007 it sponsored its first local couple by providing volunteers to help with their son, who is already benefiting. Today that sponsorship has grown to three families.
Rich and Sugey now see that as much as they have given Tommy, he has returned that gift tenfold. “He has given us a purpose in life,” Sugey says. “He has given us a chance to make a difference.”
The Matthews Family
Diagnosed at age 11 with osteosarcoma cancer (a diagnosis that changed to chondrosarcoma three years later), Taylor has been battling the disease for more than five years. But she has never let cancer define who she is.
“Taylor has cancer, and yet Taylor is not a cancer kid. She is a kid who has cancer,” writes Bob Matthews ’81 on the family’s Web site. “She has never stopped living, exploring, learning, laughing or making all of us laugh.”
There wasn’t much laughter on May 29, 2003, when a routine doctor’s appointment and chest X-ray led to a cancer diagnosis. “We thought she had asthma,” Sue recalls. “I was horrified when the doctor told me it was cancer.”
Bob, who runs global wealth advisory services for Citigroup, says that Taylor was teary-eyed and scared at first. But after a confident young doctor spoke to her, Taylor settled down and was ready to do battle.
And what a battle it has been. Taylor has undergone more than 15 surgeries and had 75 tumors removed to go along with countless rounds of radiation and chemotherapy.
With Taylor suddenly getting so much of her parents’ attention, family dynamics were sometimes dicey. Older sister Ryan and younger sister Corey have all been incredibly supportive, but Bob and Sue worry about the emotional impact of Taylor’s cancer on all three girls.
“When a child gets cancer, the family gets cancer,” Sue says. “One night I was trying to help Ryan do her college essays, and Taylor was vomiting on the couch. It’s tough on everyone.”
One way Bob and Sue coped was by doing intensive research. “When your kid has cancer, you can’t put medical treatment on autopilot,” Bob says. “We were never willing to accept information at face value. We learned to do our research and ask questions. We learned you should even be asking questions to the great doctors at the great hospitals and getting second and third opinions.”
Taylor coped by looking outside herself. Shortly after her diagnosis, she decided some good should come from her experience. A family friend suggested that she design headbands and key chains to sell in their local community of Scarsdale, N.Y. What was envisioned as a bake sale to raise a few hundred dollars quickly morphed into a much bigger venture.
“Sue and I were shocked about how little the U.S. government funds pediatric cancers,” Bob says. “When Taylor became aware of how little funding there was for kids, it infuriated her. She couldn’t believe the world would let kids suffer.”
In short order, tay-bandz (tay-bandz.org) was born. tay-bandz is a nonprofit organization dedicated to funding and raising awareness of pediatric cancer research. The volunteer-run foundation has raised about $550,000 through an ever-growing line of tay-bandz items and other fundraising events.
“The people at Columbia University Medical Center told Taylor that you get your name on the wall if you raise $1 million, so Taylor has committed to doing that. She wants the tay-bandz name on that wall,” Bob says.
Sue, who heads tay-bandz, reports that an astounding 98.75 percent of every dollar raised goes into cancer research at Columbia and clinical trials at MD Anderson Cancer Center in Texas.
The family suffered a setback when Taylor relapsed in May 2006. The second time around was harder for Taylor. “She was just beginning to feel people were finally treating her just like another kid,” Bob says. “She was more private this time.”
But she was just as tough. More surgeries and treatments followed, including a month-long stint last fall in Texas as Taylor’s birthday approached. “Taylor told me, ‘I’m not spending my 16th birthday in Texas,’” Sue says. “So she did double-duty with her radiation treatments one day and then a last treatment at 7:15 in the morning before our 9:00 flight home. Needless to say, we made it home for her birthday.”
Now a feisty 16-year-old, Taylor does well in school, socializes with friends, has a boyfriend and wears T-shirts that read “Cancer Sucks.”
Taylor knows that her attitude matters to those around her and to her own recovery. “Doctors have said it is the feisty patients who do well against cancer,” Bob says. “The ones who scream and yell, who get angry and who fight are the ones who get the best results. That’s Taylor. She never backs down from a challenge.”
The Newman Family
Familial dysautonomia (FD) is a genetic disorder that affects the autonomic and sensory nervous system that controls every bodily function we don’t think about. That means chewing foods and swallowing liquids are difficult and a patient’s blood pressure and body temperature may fluctuate dangerously.
During the first year of Rebecca’s life, she was hospitalized a dozen times for pneumonia, leading doctors to believe there was a problem with her lungs. When Rebecca was about a year old, Jeff and his wife, Lisa, first learned about FD, which runs in Ashkenazi Jewish families. They took Rebecca to New York University Medical Center to see Dr. Felicia Axelrod, who diagnosed Rebecca with a mild case of FD.
Axelrod, the nation’s leading expert on FD, is the doctor who discovered that children with FD don’t have breathing issues. Instead, it is faulty swallowing that causes liquids to go into the lungs rather than into the stomach.
Axlreod treats her patients by implanting a feeding tube. While such a radical approach gave the Newmans pause, they heeded the expert’s advice. “Just when you think you’re losing control, you’re gaining control,” says Jeff, a vice president with GE Money, about the decision to insert the tube.
The tube, which has a valve like a beach ball’s, had an immediate, positive effect. Rebecca has been hospitalized for pneumonia only once in the nine years since its insertion. It enables Rebecca to more easily take in the 50 ounces of liquids she needs daily.
Rebecca is now old enough to give herself the liquids. “She thinks it’s kind of cool that she can talk and eat at the same time,” Jeff says with a laugh. “She didn’t start talking until she was three, and now she doesn’t shut up. She is very social.”
This sense of humor and Rebecca’s determined nature have combined to give her as normal a life as possible. Like most kids, she hangs out with friends and attends school, where she’s a fifth grader. Unlike most kids, she has a personal nurse who accompanies her to school, has chewing therapy so she can eat solid foods, and takes blood-pressure medicine daily and valium when she has an FD crisis.
Her condition makes her tire easily, which can trigger problems. Despite that, she has tried swimming, horseback riding and skiing. “She doesn’t think about what she can’t do,” Jeff says. “She is not much of a complainer and doesn’t want any extra attention.”
Like most kids her age, too, she is itching for more independence. In the past, Lisa went to school on Rebecca’s first day to explain FD, but this year Rebecca did it herself.
The Newmans try to balance that independence with realism. “We try to give her as much freedom as we can,” Jeff says. “She doesn’t like us to hover, but we know a medical crisis can occur at any time.”
They are encouraged that during Rebecca’s lifetime there have been important medical advances. The FD gene was identified in 2000, and now prenatal testing is available. “Plus, a new drug appears to reverse some of FD’s symptoms,” says Jeff, who participated in the clinical trials because he is a carrier for the FD gene.
Until the early 1980s, half of children with FD died by age five. Today, life expectancy is 40. But there is still no cure and little awareness of FD. So the Newmans, who live in Rye Brook, N.Y., have taken it upon themselves to educate people and raise monies for the Dysautonomia Foundation (familialdysautonomia.org).
Four years ago, Jeff and Lisa helped start the Tour de Foliage. The first year, 50 bicyclists participated and raised $50,000. In October 2007, 105 riders raised $180,000.
Rebecca’s older sister Julia sold $3 bracelets with the inscription “Summer 2007” for her Bat Mitzvah project. The $1,200 she and her friend raised went to Camp Simcha Special, the sleep-away camp for kids with medical conditions that Rebecca attends in the summer.
Dealing with the challenges of FD is a part of all their lives, but the Newmans’ mantra is to take it all in stride. “Every family has issues,” Jeff says. “This is ours.”