By the time Anna White was about 12 weeks old, parents Johnny and Tori knew there was something terribly wrong with their daughter.
“We had to take her to the doctor for a three-month checkup and she was still having a lot of difficulty holding her head up,” Tori White recalled. “At that point, we thought Anna was blind, because she could not seem to focus on anything.”
As it would turn out, the child was suffering from lissencephaly — a rare brain formation disorder with less than 1,000 cases diagnosed worldwide. It results from a defect during the gestation period which hampers the normal development of brain folds and grooves.
“Where our brains are bumpy and contoured, hers is smooth like a marble,” Anna’s mother explained while spelling out l-i-s-s-e-n-c-e-p-h-a-l-y. “That just means smooth brain.”
Babies born with lissencephaly are severely neurologically impaired and often die by the time they are several months old.
The White family is blessed in that regard, since Anna is now 3 years old.
“She really has been such a blessing to me and I love it when I get to share her story with others,” Tori White added.
However, there is a down side to her daughter’s illness that presents a constant struggle for the Whites, who live in the Rockford community of Surry County.
“She is blind, legally blind — I mean, she can see a little, but it’s very, very little,” Tori White said. She is not able to sit up by herself and in order to move around must be carried or use a wheelchair. Since Anna has trouble swallowing, she has to take medications through a tube in her stomach.
“We have nursing care for about 11 hours a day so I’m able to work,” Tori White said of her job as a kindergarten teacher at Rockford Elementary School. Meanwhile, Anna’s dad manages a battery store in Winston-Salem, with the family also including their 6-year-old son and two children from a previous marriage of Johnny White’s who are 14 and 12 years old.
Caring for a child with a serious disorder such as lissencephaly can create a “lonely” existence for a family, Lori White said of friends and associates who have quit coming around in some cases because they don’t know how to react or understand the condition.
The Whites must “pick and choose” family outings, ever mindful of how it might affect Anna, who is prone to seizures. For example, the child largely is confined to their home during the colder months because her immune system is compromised and she is more susceptible to illness.
It is not unusual for Anna to be hospitalized several times over the course of a winter. The couple has to depend on family members to take care of the other children when Anna is in the hospital, which is problematic since both their parents are older and Tori’s mother, Nancy Steele, suffers from breast cancer.
“My husband and I have to depend on each other,” she said.
Church To Rescue
There is a ray of hope for the White family in the form of a specialty hospital in Philadelphia. It offers a type of therapeutic “brain training” for victims of lissencephaly, designed to help them master basic functions such as eating through their mouths.
While this treatment can’t cure the condition, it will allow Anna to have a better quality of life, her mother said.
The couple also will attend upcoming sessions at the Philadelphia facility designed to teach them to better manage their daughter’s condition.
Anna’s treatment will be covered by insurance, but her parents must pay tuition and bear travel, lodging and other expenses, with their initial visit to Philadelphia set for June 24. They are to return six months later.
Freedom Gospel Church in Rockford, which the Whites attend, has come to the family’s rescue by mounting a fundraising effort that includes the sale of tickets for port-a-pit chicken.
“We hope to raise at least $4,000,” Tori White said.
April 6 Event
The port-a-pit chicken will be served, at a cost of $8 per plate, during a special event on April 6 at the Holly Springs Ruritan Club building, located on the corner of Holly Springs Church Road and Reeves Mill Road. It begins at 11 a.m.
In addition to the food, it will feature a motorcycle ride, gospel singing and a silent auction. “We have lots of stuff,” Lori White said, mentioning Sabika Jewelry, gift certificates and handmade crafts that will be offered along with other items.
A key attraction at the April 6 gathering will be an appearance by Zach and Rodney Ministries, made up of two young men from Trinity. The musical duo specializes in encouraging and inspiring children and families such as the Whites who are facing what the pair calls “Why Us?” moments in life.
Zach and Rodney Ministries frequently makes presentations at revivals and other events in the region.
Tickets for the port-a-pit chicken fundraiser are available from members of Freedom Gospel Church, including Wanda Crabb at 325-0696 and Jessica Holder, 401-0996.
Reach Tom Joyce at 719-1924 or email@example.com.