Sally and Bill Zepp with their children Andrew, Alex and Avry, who all have Fragile X Syndrome

Bill and Sally Zepp of Westminster look forward to visiting Disney World with their three teenage sons at least twice a year. But getting there has its share of challenges.
“We tend to draw a bit of attention going through airport security,” says Sally, who has gotten used to the stares they get as the boys, with their backpacks stuffed with Woody and Buzz Lightyear dolls, trains and view masters, fidget compulsively and repeat words loudly.
The Zepps’ sons, 16-year-old twins Alex and Andrew and 13-year-old Avery, have all been diagnosed with autism and Fragile X Syndrome, the most common inherited cause of mental impairment and the most common known genetic cause of autism. All three boys exhibit varying degrees of repetitive and compulsive behaviors, single-word utterances and, at times, uncontrollable tantrums.
“We’ve never held them back from anything,” says Sally. “We believe that they have the right to be out there doing everything that everyone else does.”
That belief extends to all families raising children with special needs, which inspired the couple to form the Zepp Children’s Foundation (ZCF) to assist other families in similar situations.
Recently the couple sat down with Maryland Family to share their struggles, successes and convictions. This is their story.
An Emotional Roller Coaster
With the news they were having twins, Bill and Sally knew their lives were about to change — they just didn’t realize how much.
When Alex and Andrew were born six weeks early, they appeared to be normal, healthy babies. With each passing month, however, the Zepps noticed they weren’t reaching any of the normal milestones, such as rolling, crawling and walking.
“At first we thought this was how it was with twins,” says Bill. “Everyone kept telling us they were just delayed and they’d catch up.”
But deep down they knew something was wrong, especially when the boys showed no signs of improvement after working with speech and physical therapists and attending Carroll County’s infant and toddler program for high-risk children.
It wasn’t until Sally observed a home-based program for children with autism that the extent of her sons’ delays became clear. She immediately took the twins to a psychiatrist who diagnosed them both with autism. Still, the Zepps weren’t satisfied. There was just something different about Alex and Andrew compared to other autistic children.
“Our boys saw 27 professionals before we finally had an answer thanks to a simple blood test showing the boys had Fragile X,” says Sally. “When I got the call that the boys tested positive, I fell to pieces.”
In addition to the twins’ diagnosis at age 3, Sally had given birth two months premature to their third son, Avery, who also tested positive for Fragile X – which has more significant behavioral issues and delays.
“That was a very tough year for us, but at least we knew what we were dealing with,” says Sally.
Building a Support System
Although they had a diagnosis, neither Sally nor Bill had ever heard of Fragile X. Through more tests they learned that Sally was a carrier of the genetic disorder that can be passed down silently through generations before a child is affected. With hundreds of questions but no idea where to turn, Sally spent hours searching for answers. She soon came across the Maryland Fragile X Resource Group.
“Through them I learned about more resources, met a lot of families in similar situations, and was introduced to the National Fragile X Foundation,” she says.
In the meantime, all the three boys were in a home-based intensive early intervention program. But at 8 years old the twins maxed out of the program and the Zepps were faced with finding a school.
After working with the Carroll County Public School System for nearly two years, the Zepps were relieved when their boys were referred to and accepted at the Kennedy Krieger Institute’s school for students with a wide range of disabilities.
“The boys’ severe behaviors were interfering with their ability to learn,” says Patrick Millard, director of education at Kennedy Krieger Institute Lower/Middle School in Baltimore. “To help reduce those behaviors we provided the boys with highly structured and individualized programs, enabling them to spend more time engaged in learning.”
Sally soon got involved in the school’s parent association doing everything from organizing social opportunities for families to creating an informative Web site and newsletter, says Millard.
“With educational stability for the boys, as well as a support system of families and staff to rely on, we felt a huge weight lifted,” says Sally.
A Vision to Help
While caring for their children, the Zepps discovered that critical resources and home respite care were extremely challenging to find and very limited.
“We wanted to help other families, to let them know that they weren’t alone and that they’d be OK,” says Sally.
In 2006 the Zepps began laying the groundwork for a nonprofit that would serve the special needs communities with an emphasis on Fragile X Syndrome, Autism, Asperger’s Syndrome and related disorders. A year later, with the help from an inheritance Sally received and a dedicated team of volunteers the Zepp Children’s Foundation began distributing its first grants. In addition to financial support, the foundation also provides educational and emotional support.
“You’ve got to have some good listening ears,” says Sally who receives a lot of calls from parents who just need a word of encouragement.
Lisa Wiederlight, a single mom from Timonium whose 9-year-old son was diagnosed with autism, dyspraxia and colitis, is one of the hundreds of parents ZCF has helped.
“The Zepp Foundation provided my assistant with funding for a class to help her communicate more effectively with my son,” says Wiederlight, who has been on Maryland’s autism waiver waiting list to receive financial assistance for five years.
The Zepps are excited to play a part in spreading awareness of the enormous need for resources. Recently ZCF was selected by NASCAR champion Jimmie Johnson’s “Helmet of Hope” initiative.
“It’s a foundation you can believe in and trust in,” says Joanne Brown of Cooksville, one of the foundation’s donors. “I feel good knowing 100 percent of my money goes to helping people.”
Providing a Voice
“In her quest to find programs that would help our boys, Sally became an extremely effective advocate for all families struggling with autism spectrum disorders,” says Bill.
Last year Sally testified before the House of Delegate’s Health and Government Operations Committee on forming the Maryland Commission on Autism, which would help families struggling to find resources and assistance. Three months later, Governor Martin O’Malley signed a bill to create the commission.
“It’s a blessing and a privilege to represent my family and families like mine before legislatures so that when they are signing on the bottom line and forming committees they think of us,” says Sally.
Because of her willingness to speak up for other families who may not have a total awareness of the complicated system of care for kids, Sally has become a role model to many, says Stephanie Maskovyak, president of JumpStart Concepts, Inc. in Cockeysville and mother of two adult children with mental health and autism diagnosis.
“She has a sense of humor, an ability to articulate goals and a skill at getting professionals to understand without argumentation,” says Maskovyak. “We are blessed to have her as such a strong advocate.”
Bill and Sally say their secret to rising above the challenges of caring for three special needs children is simple: You’ve got to stay positive.
“We have learned to expect the unexpected, and when things to go wrong, we don’t sweat it,” says Sally. “Instead we put our energy into making change.”
For example, on a recent flight to Florida using AirTran, the Zepps were frustrated to discover the airline doesn’t allow families of children with special needs to pre-board. Instead of getting angry and making a scene, she simply made a mental note to write them a letter advocating for them to change their policies.
“One of the things I respect most about Sally is her perseverance to ensure her kids and all kids get what they need,” says Maskovyak.
Everything the Zepps do is centered on their children, from building a house spacious enough to accommodate the boys as they become grown men and installing a swimming pool (it’s the one physical exercise they all enjoy doing) to hiring support staff who all have a different position in helping the boys and regularly visiting Disney World.
“We’re living the life that was set before us, and making adjustments along the way,” says Sally. “If we put our trust in God and walk the road he’s going to see us through.”

AT A GLANCE
Zepp Children’s Foundation
How ZCF Can Help: Last year ZCF awarded $10,000 in grants ranging from $100 to $500 for anything that improves the quality of life for a child with special needs, as well as their families and caregivers. Examples include respite care, swimming lessons and adaptive equipment.
How You Can Help: Donations can be made online at www.zcfcares.org or by mail at: Zepp Children’s Foundation, P.O. Box 825, Westminster, MD 21158. You can also volunteer with ZCF and receive a free one-day admission to a theme park at Disneyland Resort or Walt Disney World Resort. Visit www.GiveADayGetADisneyDay.com.