Grover Beach residents Mark and Cynthia Wilson know the pain, the struggle and the economic hardships of having a child with Apert syndrome.

That's why they recently created a foundation to support families with children suffering from the disease.

The Taylor Wilson Foundation, named after their 7-year-old son, aims to raise money to assist families with everything from food to travel and lodging costs associated with treatment for the genetic disorder.

Apert syndrome creates distortions of the head and face. Characteristics include webbed hands and feet, a skull wide from side to side and short from back to front and a sunken middle part of the face.

Surgery is usually needed to prevent brain damage. Since he was born, Taylor has endured more than 35 reconstructive surgeries, with his next one scheduled Aug. 3.

“When he was born, he didn't have any fingers, and every time he goes into surgery, he comes out looking different,” said Mark Wilson. “We have met people who have had their baby and had to give it away because they just could not handle it.”

Testing for Apert Syndrome through genetic mapping did not begin until 2002, two years after Taylor was born.

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“Even if we had known before about our son's condition, it would not have affected our decision (to give birth) in any way,” Mark Wilson said.

Taylor is now a second-grade student at Fairgrove Elementary School in Grover Beach and has an older brother, Zach, who is a fifth-grade student at the same school.

Among the activities Taylor most enjoys are soccer and swimming.

“He absolutely loves life,” said Cynthia Wilson. “(Taylor) wakes up every morning and looks forward to what the day will bring. There isn't a moment where this boy isn't busy playing games, reading or spending time outdoors.”

Taylor's recent surgeries have been at Children's Hospital, based at UCLA.

Mark Urata, Children's Hospital of Los Angeles director of craniofacial surgery, performed a 12-hour operation on Taylor earlier this year to help bring his jaw together.

“I see a fair amount of these challenging cases,” said Urata. “Often these kids don't fit in. Unfortunately, there is a certain kind of stigma that follows the child who has this condition. Luckily, Taylor has a wonderful and supportive family and he is very comfortable with himself.”

As of 2007, Taylor's treatment and surgeries have exceeded the $13-million mark. At present, the medical expenses for Taylor's treatment are being covered through Medi-Cal.

But to help families facing the same financial burden without assistance, the Wilsons created the Taylor Wilson Foundation.

“There are agencies out there that help the kids with what is needed, but there is nothing for the parents,” said Mark Wilson. “We have literally slept in our cars a lot of times because the agencies sometimes fail in providing information.”

Wilson sent out an e-mail earlier this year to Donna Jacobs, vice president of nuclear services for Pacific Gas and Electric Co., who provided the information needed to start the foundation.

“I heard her daughter had childhood diabetes, so I figured she would (understand),” he added.

After three months of discussions, an agreement was reached where PG&E would match up to $10,000 of whatever the foundation was able to raise.

The family has set a goal to raise $20,000 by the end of this year.

The foundation is housed at the World Craniofacial Foundation headquarters in Dallas, Texas.

“It is unbelievable how people are here for us,” Cynthia Wilson added. “They can see our ongoing stress and let us vent our frustrations.”

Apert syndrome afflicts one in 100,000

Apert syndrome is a genetic condition involving distortions of the head and face that affects one out of every 100,000 people in the United States.

Those suffering from the disease have characteristics that include webbing of the hands and feet, a skull that is wide on the sides and short from back to front, and a sunken middle part of the face.

Surgery is needed to prevent closing sutures in the skull from damaging brain development.

“These operations are very complex and typically done at pediatric surgical hospitals,” said Wally Hosn, M.D., who specializes in plastic surgery. “These patients require multiple operations. You can't do all the operations at once because the child is still developing.”

Hosn has conducted more than 50 surgeries for children with Apert syndrome.

Once a child has been born with the condition, “The chances of having another child with Apert syndrome is almost nonexistent if both parents are unaffected,” according to the National Craniofacial Association.

“There is no link between anything the mother did or did not do while she was pregnant and the occurrence of Apert syndrome,” according to association literature.

The current consensus among doctors is that there is no link between anything that happened during pregnancy and the occurrence of Apert disease.

If one parent has Apert syndrome, there is a 50-percent chance that his or her children will have the condition.

“It is a challenging problem, and that is why it is important to address it early,” Hosn added. “It is specially hard on children because of the impact the condition can have on their self-esteem.”

Combined orthodontic and orthognathic surgery can help to relieve some of the facial deformities, such as the flat or concave face.

In 1906, Eugène Apert, a French physician, first described nine people with a similar disorder. Since he was the first to do so, his name is associated with the syndrome.

For more information on the conditions and resources available for treatment, call the National Craniofacial Association toll-free at (800) 332-2373.

Hector Trujillo can be reached at 489-4206, Ext. 5008, or htrujillo@santamariatimes.com.

July 16, 2007