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A special lesson
Son’s illnes gives Wolfords new outlook
USC Football offensive line coach Eric Wolford with son Stone, 2; wife Melinda; and daughter Marlee, 15 months.
Photograph courtesy of USC Athletics Department
Posted on 08.07.09
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Founders: Eric and Melinda Wolford
Mission: To assist families of children with neurological differences, increase awareness for CFC Syndrome, and raise money for its research.
Contributions: Send checks to No Stone Unturned Foundation, P.O. Box 50780, Columbia, S.C. 29250.
More information: nostonefoundation.org
Eric Wolford experiences the highest highs and the lowest lows with the 16 offensive linemen he coaches on the South Carolina football team. He does not blink in saying they are his "sons" on the Bluff Road practice field and at Williams-Brice Stadium on game days.
There are good days and bad days, according to Wolford, as the offensive line learns to play for the first-year USC assistant coach. No matter his mood, it all changes when Wolford retires each day to his Heathwood home in Columbia, where his 2-year-old son, Stone, awaits.
"There is not a day that is not special with him. We don't have a bad day," Wolford says. "He's a little grumpy sometimes, but there aren't many bad days with Stone, I can promise you that."
Stone is one of about 300 children identified worldwide with Cardio-Facio-Cutaneous Syndrome, or CFC Syndrome, a genetic condition that affects the heart, face and skin. Eric and his wife, Melinda, established the No Stone Unturned Foundation to raise money for CFC Syndrome research — there is no cure for the condition — and to assist families whose children have neurological disorders.
"They may look different or experience the world differently," Melinda says of children with CFC Syndrome, "but they still have a right to enjoy life as much as anybody else instead of being rejected."
Stone has not slept through a night since birth. He is unable to eat. Rather, he is fed a mixture of supplements and liquids with a bottle. He does not speak. Yet he remains a "bundle of joy" to the Wolfords and just about anyone who meets him.
"He plays like any other child," Melinda says. "He's got a great sense of humor. He's got pure joy in his heart like most children with disabilities, unlike some of us. He walks. He tries to communicate through sign language. He has a few words that are difficult to understand, but he is able to communicate most of what he needs."
The foundation was the brainchild of Melinda, a practicing doctor of psychology for 17 years with a special interest in neurological disorders. Her background helped the Wolfords navigate their way through more than 40 doctors and an untold number of therapists in an effort to identify Stone's disability.
In 2009, the Wolfords have spent $8,000 on medical care for Stone that was not covered under Eric's health-insurance plan. Beyond the expenses, the Wolfords have learned that it takes an inordinate amount of patience and perseverance to gain the necessary medical attention for a child with CFC Syndrome.
Soon after the Wolfords' first child was born on Nov. 26, 2005, Melinda noticed some abnormalities in Stone. He suffered from torticollis, an inability to move his neck. He also had pulmonary stenosis, a heart condition, and had no vision until he was 6 months old.
In visits with eight pediatricians, Melinda was told her son was OK and would grow out of his difficulties.
"Here are the things I am seeing; I know something is wrong," she recalls telling doctors. "We need intervention."
Along the way, Stone visited cardiologists, geneticists, gastrointestinal specialists, ophthalmologists, optometrists, urologists, dermatologists, neurologists, occupational therapists, physical therapists, feeding therapists and ear, nose and throat specialists. The Wolfords even sought help from nontraditional doctors.
When the Wolfords moved to Illinois, where Eric was an assistant coach, a doctor there recommended 18-month-old Stone be taken to another geneticist.
"There is no way," Melinda recalls telling the doctor. "There is no way I'm going back to a geneticist. I've been to three. He's had all kinds of testing and nothing's come back. I can't take another thing being wrong with my child."
Melinda waited six months before contacting a geneticist. Initially, the doctor believed Stone had Noonan's Syndrome, a neurological disorder similar to CFC Syndrome. Finally, through further blood testing, Stone was determined to have CFC Syndrome.
"I was breathless. I could not speak. I could not respond. I was completely blown away," Melinda says of hearing the news. She chokes up when talking about it, and there is a long pause before she continues.
"We had a diagnosis that we could move forward with," she says. "It gave us a more holistic picture of what we needed to look for that we hadn't looked for."
It was equally difficult for Eric to comprehend.
"You always have hope that your kid is just slow, maybe, and you think he is going to grow out of it," Eric says. "Then there is the reality that sets in, and you've got to face the fact that he's not going to."
Since then, the Wolfords have worked feverishly to help Stone live life to the fullest. Eric recently purchased a puppy for Stone so the boy could have an additional outlet to express his affection. They also have provided Stone with a sister, 15-month-old Marlee.
Along the way, the Wolfords have watched in awe as Stone has lit up the lives of others. In hospital visits, Melinda says Stone can flash a smile and belt out a high-pitched "Hi!" that melts elder patients in wheelchairs and nurses alike.
As much as they have learned from the experience, the Wolfords say they have learned the most from their son.
"I feel like Stone has a purpose. I feel like in many ways, he is here to teach me lessons and to make me a better person," Melinda says. "He's definitely made us better people."
Eric adds: "It has taught me to be humble and patient. You have to be. You have to take what you're dealt and go on. You can sit around and feel sorry for yourself, but that's just going to set you back. We can't do that."
What the Wolfords can do is assist other families in similar situations. They also can better teach life lessons, Melinda as a psychologist with Richland 1 schools and Eric as a football coach at USC.
No matter what they teach, though, it cannot compare to what they learn from their 2-year-old son.
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