South Charlotte

Family helps fight neurological disease

Six years ago, the Observer interviewed the Shields family and shared the amazing story of how Kris and Barry Shields adopted Cindy, a toddler from El Salvador.

Cindy taught Kris and Barry about courage and love as she learned to live with blindness and special needs.

But what they didn't know was that Cindy would also help her brother Zander - and save his life.

"At the time we adopted Cindy, I was a social worker and worked as a therapist," said Kris, 40.

"We knew how to do early intervention and get the services Cindy needed. Many say that we saved this little girl. But in reality, she saved us. Because of Cindy, we saw the signs that Zander needed help."

The Shields' two biological children, Hadley, 8, and Zander, 6, needed therapists at an early age to help with muscle weakness and motor control. Hadley overcame most of the symptoms while Zander continued to struggle. Zander began to have problems with learning development and suffered from a lack of energy.

At the advice of his pediatrician, the Shields met with a neurologist who discussed the possible diagnosis of mitochondrial disease.

Even though the disease is common, it is relatively unknown.

According to Cliff Gorski, director of communications for the United Mitochondrial Disease Foundation, one in 2,000 people is born with the disease and research from the United Kingdom indicates that 1 in 200 people is born with a mutation that could develop into the disease in their lifetime

"Mitochondrial diseases result from failures of the mitochondria, which are responsible for creating more than 90 percent of the energy needed to sustain life and support growth," said Gorski. "When they fail, less energy is generated within the cell, and cell injury and even cell death follow. If this process is repeated throughout the body, whole systems (brain, heart, liver, muscles, kidney, respiratory) begin to fail."

The neurologist explained to the Shields family that this disease could impact surgeries or long-term illnesses. Zander was scheduled to have his tonsils removed in the coming weeks. At the recommendation of the neurologist, certain safety measures were taken for anesthesia during the surgery.

"He likely would not have survived his surgery if we hadn't taken those precautions," said Kris.

Now Zander is a kindergartener at Socrates Academy. He takes medications for his blood pressure and uses supplemental oxygen during recess and physical education classes.

Kris, a former licensed master social worker and now a stay-at-home mom, maintains a tight connection to her Kappa Delta sorority sisters from Queens University of Charlotte. In recent years, they have traveled to locations including Las Vegas and Greece to celebrate 40th birthdays.

But Kris didn't want to go to exotic places for her birthday. She chose to participate in the second annual Energy for Life Walk, which raises money and awareness for mitochondrial disease. Fifteen of her sorority sisters joined her for the one-mile walk in Charlotte.

One of Kris' sorority sisters, Alice-Lyle Hickson, also has a child with mitochondrial disease. Both Kris and Alice-Lyle were recognized for their efforts to each recruit 66 registered walkers.

Kris' individual team raised $3,500, and overall, the walk, with more than 1,000 participants, raised more than $150,000.

"These are not fundraising professionals doing this walk," said Kris. "These are moms. There were three mitochondrial specialists at the walk to answer parent questions. In addition, the moms have organized physician training by mitochondrial specialists at Carolinas Medical Center and Presbyterian hospitals. They are helping other parents be aware and helping to keep kids safe." Both Cindy and Hadley enjoy cheerleading with the Charlotte All Stars team, which includes special needs children.

Recently Hadley began to experience fatigue, and the family is awaiting test results to determine if she is a carrier of mitochondrial disease.