SE: No Stone Unturned
SE: No Stone Unturned
July 9, 2012
By Mark Janssen
Meet Stone Wolford.
He’s a youngster closing in on seven years of age with a boyish smile and a joyful personality who, on some days, lives life to the fullest.
But that’s only on some days.
“You just never know,” said Stone’s mother, Dr. Melinda Wolford. “It really is day to day on how he’s going to be.”
Young Stone has Cardiofaciocutaneous Syndrome (CFC Syndrome), which is a rare genetic disorder that affects a child’s neurology and development.
According to CFC International, an estimated 200 to 300 people suffer from this disorder worldwide. On average, children with CFC live between four to 14 years. In the state of Kansas, there are three known cases of CFC.
The Wolfords took Stone to 40-plus doctors – cardiologists, opthamologists, surgeons, dermatologists, allergy specialists, geneticists, hematologists and neurologists, among others – in the first 24 months of his life.
Then came the answer that Eric and Melinda – not to mention Stone – didn’t want to hear. Stone had the deadly disease of CFC Syndrome.
When he was born, Dr. Wolford said, “We named him Stone. We had no idea how much our little ‘rock’ would rock our world.”
The name Eric Wolford might ring a bell to the Wildcat Nation. He played on K-State’s offensive line from 1990-93. Today, he is the head coach at Youngstown State where he is joined on his coaching staff by former Wildcat Andre Coleman.
Eric knows he may never experience a Senior Night on the football field with Stone, but just like any father would do, he and Stone love to roughhouse on the living room floor… at least as much as possible.
“Stone is our very special little soul. He’s our gift,” said Dr. Wolford. “Through him, we can be there for each other and take our relationship to a different place. We get to find out what we are really all about as a couple.”
This weekend, the Wolfords will host the Fourth Annual No Stone Unturned Foundation fundraiser, which will include the return to Manhattan and the K-State campus many ex-Wildcat football players who will take part in a reunion dinner and auction Friday at 6 p.m., at the K-State Alumni Center. The dinner will be followed by a golf tournament at the Colbert Hills at 9 a.m., Saturday.
NO STONE UNTURNED FOUNDATION
The tri-mission of The No Stone Unturned Foundation is:
• To provide support for individuals and their families touched by debilitating disorders
• To raise awareness by providing information and training to the public, the medical community and school systems
• To support current and aggressive research that will enhance the lives of children with CFC
Syndrome and other genetic and neurological differences.
On the upcoming weekend, Mikeal Hodges of the local committee promoting the event said, “This is our ‘get out and vote campaign.’ We’re trying to get our information out to the public on the seriousness of CFC, plus kids with other disabilities such as autism. Because CFC is so rare, Melinda, Eric and our committee wanted to include children with autism and other developmental challenges.”
Today, Dr. Wolford says that the number of autism cases have increased by 900 percent since 2005, which today includes one in every 89 children born.
Last year, over 250 people attended the festivities with $46,000 raised. This year, Hodges hopes that can be boosted by 30 percent.
Max Conde, another local committee member, said that 70 percent of the revenues will stay in the Manhattan community, 15 percent will go to the research of CFC, 10 percent to the Elijah Alexander (another former Wildcat) Tackle Cancer Foundation and 5 percent to the Golden Cats organization of former football lettermen.
“Wolf and I know we won’t be living in any one place long just because that is the life of a coach,” said Dr. Wolford. “Manhattan and Kansas State meant so much to Wolf that we decided that this is where we wanted the money from the Foundation to stay.”
Currently, developmental-challenged children in the Manhattan area have to go to Kansas City or Wichita for therapy, which can include learning how to walk, talk and eat.
With that in mind, Wolford said, “There are some incredible needs locally, so it’s our dream to start a therapy school or clinic where a young person could go three to five hours a day to get the therapy they need and deserve. It’s only in the talking stages, but to have a school is our hope and dream.”
It was soon after his birth the Wolfords noticed their infant son had trouble moving his neck, and then wasn’t tracking with his eyes, and then wasn’t gaining weight. Early, he didn’t smile, sit or crawl. At 18 months, he still wasn’t walking.
“Though 14 years of experience as a school psychologist specializing in neurological disorders of children, I thought I could handle the situation, but I couldn’t,” said Dr. Wolford. “I found that it’s unbelievably tough to maneuver through the medical community.”
Today, Dr. Wolford reports that Stone is showing progress. He still doesn’t eat solid foods, but he consumes close to 6,000 calories per day with a nutritious liquid concoction that includes PediaSure and Instant Carnation Breakfast that is served as a smoothie and consumed through a special bottle.
Through the recent purchase of an iPad, Wolford says, “Stone’s communication skills have increased dramatically, but there is very little verbal communication.”
Eric, who has served as an assistant coach at Arizona, Illinois and South Carolina prior to becoming head coach at Youngstown State, says, “We’re on borrowed time right now. We just have to enjoy every day we have him.”
Today, the Wolfords jointly say, “Because of Stone, our lives are sometimes more painful, but always richer, deeper and more fulfilling than we could have ever imagined.”
For more information on the No Stone Unturned Foundation, visit www.nostonefoundation.org.
We hope you enjoy K-State Sports Extra. We would like to hear your comments and any story ideas for future emails, so fire them our way. Contact either Mark Janssen or Kansas State Assistant AD for Communications Kenny Lannou.