Turning Grief into Hope

Turning Grief into HopeThe Sudden Loss of Her Husband to Marfan Syndrome Prompted Ashley Barkocy to Get the Word Out About the Rare Genetic Disorder

By Lisa Monti

Ashley Hunnicutt and Steve Barkocy, married almost 10 years, were living full lives in the Fort Walton Beach area, enriched by their young daughters, their close-knit families and a wide circle of friends. Both Emerald Coast natives — Ashley is from Destin and Steve grew up in Shalimar — they met in 1993 and were married four years later.

Steve worked at a large beer distributorship based in Pensacola and at Ashley’s family’s insurance business and was well-known in the community. He was deeply involved in the All Sports Association of Fort Walton Beach, which raises money for youth-oriented nonprofit sports organizations and charitable causes.

“Steve really loved being a part of that organization,” Ashley recalls. “It was very close to his heart.”

He also loved photography and was known for his knack of spotting cobia. He collected baseball cards, sports autographs and memorabilia.

When the All Sports Association invited top sports figures to town, Steve’s favorite thing to do was to meet and greet the VIPs before their annual banquets.

“He never met a stranger,” Ashley says.

It was nearly three years ago that Steve’s life ended unexpectedly at age 42. The cause was Marfan syndrome, a rare genetic disorder of the connective tissue. At the time of his death, Ashley was expecting their third daughter.

According to the National Marfan Foundation, the syndrome can affect the cardiovascular system, the skeletal system, the eyes and other parts of the body. The foundation’s Web site says that some Marfan syndrome features are easy to see. Others, such as heart problems, are hidden and require special tests to find them.

Ashley says Steve was treated for scoliosis as a child and into his teens, and he was flatfooted. She believes that his doctors failed to diagnose his condition or failed to diagnostically rule out the syndrome and ended up prescribing medication that was contraindicated for cardiovascular issues. These failures, she contends, resulted in an enlarged heart and a fatal aneurysm.

Now, three years after his death, Ashley continues to make the difficult adjustment to a life without Steve, whose loss, she says, was devastating to everyone who knew him.

“It’s still shocking to me,” she says of Steve’s sudden death on Dec. 8, 2006.

Since then, Ashley has dedicated herself to raising their girls: Macy, 6; Evie, 3; and Sophie, 22 months. She also is starting to take on an unfamiliar role, helping to educate the public about the little-known disorder that took Steve’s life. She is now doing volunteer work with the National Marfan Foundation in that capacity.

“Marfan is a disorder of the connective tissue, which is the glue that holds the body together,” Ashley explains.

And it is seen in people with abnormally long extremities.

“It’s sometimes referred to as Abe Lincoln’s disease,” she says. “In 75 percent of people who get it, there is a family history.”

The national foundation says Marfan syndrome often is hereditary, but approximately 25 to 30 percent of affected people are the first in their family to have the disorder. It is estimated that thousands of people do not even know that they are affected by the disorder. Steve’s father, Frank, has the syndrome. Because her three daughters are susceptible to developing the disorder, Ashley has now become a health advocate on their behalf.

“When your own children have a 50 percent chance of having the same syndrome, you have to dive into it and learn as much as you possibly can,” she says.

Ashley is learning through her own research and through contacts with the New York-based national foundation.

Slowly, she is beginning to feel more comfortable taking an active role in helping people understand the disorder that has completely changed her life and that of her family.

“Public education is really something I’ve only just begun, because the first thing I needed to do was take care of my family,” she says. “I’m trying to get to a place where I could speak about it without being tearful, and that’s been quite a journey.”

There are some very fundamental lessons that all medical consumers can learn from what happened to Steve, Ashley says. Her advice to those dealing with medical issues: “Be your own health care advocate.”

Ashley has had her oldest daughter screened for the disorder at Johns Hopkins Hospital in Baltimore, and she says that “Macy does not appear to have cardio implication” associated with the syndrome. The two younger girls will begin screening around age 4.

“I’m trying to figure out my role in life after this happened, and a big role is education,” Ashley says. “The thing that makes me sick is that his death could have been prevented if people were paying closer attention.”

While the tragic loss of her husband was devastating, Ashley can find comfort in memories of their time together and with their young family.

Ashley recalled that Steve was a hands-on dad who was “tough and soft” at the same time.

“The thing that stands out most to me about him was how much he loved his girls,” she says. “For being such a guy’s guy who liked hunting and fishing, he loved the kids. He wasn’t afraid to change diapers or make their bottles in the middle of the night.”

Steve also was known as a shutterbug who took loads of photos of the family and their many friends.

“He was famous for it,” Ashley says. “You had to invite him to a party if you wanted it well-photographed.”

Ashley says there were thousands of photos on Steve’s computer that he had taken over the years.

“But it is hard to find pictures with him in them,” she says, “because he was always behind the camera.” At his funeral, one of the ministers recounted the story of someone telling Steve that he liked the shirt he was wearing. Steve took the shirt off and gave it to him. “He put other people first,” Ashley says. “He was a charming person to be around.”

To honor Steve’s memory, Ashley, their families and friends have endowed two scholarships through the All Sports Association of Fort Walton Beach and Northwest Florida State College.

“It’s a great thing because his memory will live on with the organization that does so much good,” she says. Ashley credits her family and her faith with helping her get by as she rebuilds her life since the loss of her husband. They are, she says, the most important thing to her.

“My parents and my sisters are just the most wonderful, supportive people,” she says. “And I don’t know how you get through something like this without strong faith and a good support system in place. And the girls keep me completely grounded.” As difficult as it is, she says, she finds comfort in her faith.

“We are only here for a very short time,” Ashley says. “Heaven is forever.”

Editor’s Note: At press time, Ashley Barkocy was expecting her fourth child by a sperm donor. She plans to store the baby’s umbilical cord blood as a source of stem cells, which may help treat Marfan syndrome.