Triangle Families Spurred to Action for Special Needs
For many families in the Triangle with children with special needs, dealing with their emotional, physical or developmental concerns can completely change family life from “typical” to “extraordinary.” These kids have special needs that range from mild to life-threatening, and their families find themselves circling the wagons to protect them, making necessary changes in their lifestyles, and striving to face their challenges with optimism and determination.
Some families go beyond even that: These crusaders take on fundraising, spearhead public awareness campaigns, and even create foundations to help themselves and other families in similar situations.
We’d like to introduce you to four such local families who have embarked on a mission to play a bigger role in addressing their child’s special needs — and the needs of others, too.
‘It’s not just for Grace’
Beth Smith descibes her pregnancy and delivery of daughter, Grace, as uneventful. “We would have never known in a million years she was anything but a typical baby at first,” the Holly Springs mom says. “She was a little spitfire from the day she was born.”
But Grace’s infancy was more of a rough ride. She threw up and fussed often, stressing the new mom as she tried to soothe her daughter. “I don’t know who cried more, her or me,” says the mother of two.
Both Smith and her husband, Troy, felt something wasn’t quite right as the weeks passed. Smith, a speech pathologist, and her husband, a teacher, were very attuned to typical early development, so when Grace wasn’t looking directly at them or hitting early speech milestones, they suspected something was going on. But Grace’s pediatrician assured them everything was all right.
Finally — when Grace was 4 years old — the Smiths got an answer: Grace was diagnosed with autism.
“We took a breath and said, ‘Finally. Now we can start learning how to help her,'” Smith says. The family jumped in to learn everything they could about autism.
The Smiths quickly became involved with the Autism Society of North Carolina and Easter Seals. “We started on a fundraising and awareness level,” Smith says. For six years, the family has participated in walks through the Autism Society. And this past spring, Grace was a Child Ambassador for the Triangle Walk With Me through Easter Seals, earning a medal that she wore proudly.
“The more you get involved, the better. You’re learning new things, sharing experiences, and not feeling so isolated,” Smith says.
Plus, becoming active helps parents spread information. “It’s important to get the word out. My husband and I knew enough because of our jobs to see the signs, but not everyone has that background,” Smith says. “We want people to know about autism, learn about it and educate people so they understand you might not see a disability but a child can have these special needs. It’s not just for Grace that we’re doing it but for everyone else, too.”
‘We realized more people needed to connect locally’
Like the Smiths, Trish Gavankar and her husband Sandeep knew something wasn’t quite typical when their daughter, Marysa, was born 10 years ago. She was up all night, crying, and was breastfeeding constantly but not gaining weight.
When she was 4 months old, the Gavankars tried giving their daughter baby cereal mixed with breast milk.
“Then I tried formula,” the Apex mom recalls. “She squirmed, and some hit her face. Everywhere that formula touched her, a big welt would form.”
Ten years ago, information about food allergies wasn’t as readily available as it is today, but the Gavankars — both in medical careers — had suspicions as little Marysa failed to thrive and was constantly fussy.
Then, around her first birthday, Gavankar decided to try yogurt. “I got about a quarter of a teaspoon into her mouth and, within 20 seconds, her whole face was covered with fluid-filled blisters,” she says. Gavankar says she was shocked. “I kept looking at her, thinking, ‘I’m sleep-deprived. I can’t be seeing this,'” she remembers.
But she was, and she insisted someone help.
“I said, ‘If someone is allergic to food, who is the person to go see? I want to see that person,'” Gavankar recalls.
The Gavankars finally got an allergist appointment with a basic scratch test on Marysa’s back. Within 10 minutes, Marysa’s skin had erupted in terrible blisters. The Gavankars were soon informed their daughter was allergic to a stunning 20 allergens.
“Our life literally changed in that moment,” Gavankar says. “I remember thinking, ‘This is food. Food is supposed to help our children grow, not be as threatening as a snake or scorpion.'” She left not knowing what to feed their daughter or what she and her husband could eat around her.
That’s when she started looking for a community that would understand — and ultimately ended up co-founding N.C. Food Allergic Children Excelling Safely (FACES). “We started as a small group of families who managed to locate each other and have food-free play dates,” she says. “Then we realized that more people were having food allergies and needed to connect locally.” Now, 10 years later, the group has grown to about 350 families.
The group shares information about restaurants that are sensitive to concerns of families with food allergies. They host parties and outings that are food-safe for all attendees. They host physicians who talk to the group about allergy-related issues. And they gather to discuss products that have allergens, even if it’s a product that’s been allergen-free previously but suddenly seems to be affecting a child.
“One of the things I love so much about FACES is that we’re helping people see their kids can live fulfilling lives, even with major food allergies,” Gavankar says. “It might not be exactly like everyone else’s life, but it can definitely be a fulfilling one.”
‘You’ve got to jump in the trenches’
After trying to conceive for years, Jane Ball and her husband, Douglas, were thrilled when they found out Ball was pregnant. “All the tests in early pregnancy were normal,” Ball says, “until the ultrasound at 22 weeks.”
The scan revealed a heart defect and a 30 percent chance the baby Ball was carrying would have Down syndrome. The Balls had an amniocentesis — a procedure that allows doctors to test for chromosomal abnormalities and fetal infections — that day.
The next day, the phone call came. “It was a very cold, impersonal call from the OB,” says the Raleigh mother of three. “She was very young, and I don’t think she’d encountered this before, but she just said, ‘We got your test. I’m sorry, it’s positive.’ And that was the whole phone call.”
Ball and her husband immediately began learning everything they could about Down syndrome and the heart defect. “We knew this would affect our relationship for the rest of our lives and had to play out every scenario before making a decision,” Ball says.
Within two weeks, she joined the Triangle Down Syndrome Network and attended a mom’s night out. When little Caroline was born, Ball and her husband were overjoyed and celebrated their new little one. Soon after, they became determined to reach out to help others.
“We decided we wanted to start a foundation,” Ball says. “We launched the Caroline Ball Family Fund to help raise awareness and money for research into Down syndrome.” Within two years, they held their first fundraiser and raised more than $15,000 that day.
In 2008, the Balls purchased Sweet Carolina Gourmet, a gourmet cookie company, to help fund the Caroline Ball Family Fund. The money from the foundation goes toward research at Duke University Medical Center and offers scholarships and grants to special education teachers.
To parents thinking about becoming more involved in their child’s special needs cause, Ball says, “Everyone loves their child and wants to do something. Start where you’re comfortable. Join a club or do a walk. You’ve got to be involved and jump in the trenches, advocating for your child.”
‘You’re talking about a child you love’
When Matthew Wuchich was born early in the morning five years ago, his parents, Jeff and Renee, barely had a chance to see him before he was whisked away. The doctors thought the newborn was having seizure activity. In the end, the doctors couldn’t pinpoint a cause for the baby’s episodes and sent the family home without a diagnosis.
When Matthew was around 2 months old, he began having eye twitches. By the time he was 6 months old, he was having episodes of paralysis.
“One arm wouldn’t move, then it gradually spread to his entire body,” the Rolesville dad recalls. “Within a few minutes of waking up, he’d become paralyzed and just lay there.”
The Wuchichs noticed he wasn’t meeting developmental milestones either. But after visits to a parade of neurologists and other specialists, they had no answer — until Matthew was around 18 months old, when they found a neurologist at UNC who suggested they run tests for a rare condition called Alternating Hemiplegia of Childhood (AHC).
“It’s like having the movement problems of cerebral palsy combined with the learning issues of autism, with ADHD attention problems thrown in,” Wuchich says. “Plus, half of AHC kids have epilepsy, which Matthew does.”
Wuchich went online to learn about AHC and found the AHC Foundation. “They were kind of in disarray at the time,” Wuchich says.
In 2010, the president resigned and Wuchich stepped in to help. As the new president, he found himself in a whirlwind of activity. With only about 300 cases of AHC in the entire country, he knew he needed to work hard to raise awareness about the condition. In November of 2010, he spearheaded their entry into the Pepsi Refresh Project, which was offering grants to groups with new ideas for making a positive impact in their community.
“We were so close to winning, right before Thanksgiving,” Wuchich says. “We were in second place, and then at 3 o’clock on the last day, we got bumped out of that position. [But] WRAL-TV had done a story on us over the Thanksgiving weekend, and they ran a crawler for us that night. At 11:30 that evening, right before voting ended, we got bumped back up.”
The Foundation won the $250,000 prize, a grant that enabled them to fund a full genome-sequencing project on more than two dozen people with AHC through a collaboration between Duke University and the University of Utah. In July 2012, researchers announced they had identified the gene mutation associated with AHC, which may lead to better diagnosis and treatment.
Even with such success in his own efforts, Wuchich says parents don’t necessarily need to take such drastic steps to advocate for their child.
“Just strike up a conversation with people about your child’s special needs,” he says. “You never know who you might wind up talking to and how it could help. Even if you’re shy, you’d be amazed how comfortable you can get talking to other people about your child’s situation.”
On a recent bus trip to Washington, D.C., to speak with Sen. Kay Hagan, Wuchich started talking to other passengers about his mission. “I didn’t even ask for money,” he says in amazement, “and yet they offered me money to pay for my trip!”
Getting over a little discomfort talking to strangers is worth it, he says. “Besides, you’re talking about a child you love. What’s better than that?”
Kathleen M. Reilly is a freelance writer and mother of two in the Triangle.
For More Information
Listed below are the organizations supported by the families in this article. For additional organizations raising funds and awareness for children with special needs, see “Disability Support and Advocacy” and other condition-specific categories on our resource list, beginning on p. 24 of our Special Kids guide.
Autism Society of North Carolina – autismsociety-nc.org
Easter Seals UCP – nc.eastersealsucp.com
NC FACES (Food Allergic Children Excelling Safely) – ncfaces.org
Triangle Down Syndrome Network – triangledownsyndrome.org
Caroline Ball Family Fund – carolineball.org
AHC (Alternating Hemiplegia of Childhood) Foundation – ahckids.org