Friends and family are hoping that a specialist in Virginia can provide new hope for a 10-year-old boy who has from birth battled an array of serious health problems. To provide that hope, they are working together to stage a benefit at a local marina later this month.
Kinley Randall Whitehead was born on Sept. 5, 2001, and weighed one pound and nine ounces.
At six days of age, Kinley was diagnosed with a hole in a valve in his heart. Kinley was given two injections to close the hole. The first injection caused a rupture in a blood vessel in Kinley’s brain resulting in loss of motor skills and excessive fluid collecting on his brain.
Doctors then proceeded to do heart surgery to repair the hole in the valve in his heart. After surgery, Kinley’s intestines ruptured. The doctors then inserted shunts into Kinley’s brain to reduce the level of fluid on his brain. Kinley was sent home, but then the shunts caused his skull to collapse. Kinley was diagnosed with Dandy-Walker Syndrome, a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it. The brain vessel rupture he suffered has also caused Kinley to experience seizures since he was two weeks old.
Kinley began receiving medical treatment at Vanderbilt Hospital when he was a first-grade student at East Side Elementary School in Elizabethton. The doctors thought that Kinley’s shunt was shutting down because he was having severe migraine headaches. By the age of eight, doctors diagnosed Kinley with Lennox-Gastaut Syndrome (LGS), which is one of the more severe forms of epilepsy. It usually develops during preschool years and is characterized by several seizure types and developmental delay. Seizures are generally difficult to control due to their resistance to anti-epileptic drugs.
Kinley has continued to experience seizures, and his doctors have feared that he could suffer a potentially fatal seizure. Kinley lives his life on a variety of medications to control the seizures. He swallows seven pills every morning and 15 pills every night. The medication attempts to reduce the severity of his seizures. Kinley can experience 200 to 300 seizures per day because of his condition. Kinley’s body becomes immune to the medication about every three months, and the minor seizures become major full body seizures.
Doctors at Vanderbilt Hospital continue to modify the medications in an attempt to control the severity of the seizures, but admit they are fighting a losing battle and that a fatal seizure may be inevitable.
Deborah Whitehead, Kinley’s grandmother and guardian, has researched LGS seizures and even located a LGS seizure specialist in Virginia. Dr. John Pellock, VCU Medical Center, has experience treating LGS. Kinley has his first appointment with Dr. Pellock on July 2. Kinley’s medical care has been paid for by TennCare, but TennCare lacks authorization to pay for medical treatment in Virginia. As a result, Kinley’s medical treatment at VCU will now have to be paid for out of pocket.
Dr. Pellock has had some success treating LGS seizures with medication. He has also had some success with surgically implanting monitors to reduce the severity of the LGS seizures. Kinley and his grandmother are hoping for a successful treatment to his LGS seizures.
Kinley and his grandmother have enjoyed visiting Mallard Cove Marina at Watauga Lake since 2008. Kinley loves hanging out at the camper, and he enjoys boat rides with his friends and family during the summer season.
Kinley is confined to a wheelchair, but that doesn’t bother his big buddy, Tank, a friendly Great Dane also in residence at Mallard Cove Marina. The two have established quite a friendship, and marina visitors are likely to encounter the dynamic duo.
Kinley now attends T.A. Dugger Middle School. A group of friends are working to raise funds to help with Kinley’s medical expenses at VCU Medical Center. The fund-raising event will be centered around Mallard Cove Marina’s fireworks show on Saturday, July 7. In addition, a silent auction will be held to auction off donated prizes from local merchants. If you would like to donate an auction item, please call Pheba VanDeKrol at Mallard Cove Marina at 768-3440.
An account has been set up at Citizens Bank in Elizabethton to accept monetary donations. Please donate an item, attend the auction or donate money to the “Cause for Kinley.” Organizers emphasize that any amount may help save Kinley’s life. They have set a goal to raise $50,000 for Kinley’s medical procedures at VCU Medical Center.
The benefit “A Cause for Kinley” will be held on Saturday, July 7, from 6 to 11 p.m. at Mallard Cove Marina. The event will feature food, a DJ, door prizes, a light show and a fireworks display, all for a $5 contribution.
The marina is located at 200 Mallard Cove Drive, Butler.