MEMPHIS, TN (WMC) - A little boy fighting a fatal neurological disease arrived in Memphis on Wednesday so he wouldn't miss a dose of a treatment that helps to slow the terminal outcome.
Every two weeks, 6-year-old Micah McCorkle goes to Houston to receive his treatments for Batten disease. But, with Hurricane Harvey on the way, his family had to come up with a back-up plan.
Just like McCorckle, 5-year-old Elle Gieselmann spends four hours in a hospital every two weeks receiving a life-saving drug that slows the damage of the disease on her nervous system.
"Essentially your brain is shrinking, cells are dying off," said Elle's father, Frazer. "So, as your brain shrinks you lose abilities: walking, talking, thinking, speaking, vision."
About one year ago, a new FDA trial gave Micah and Elle's families hope. They are two of just a few kids given the trial in Columbus, Ohio.
For several months, they spent hours next door to each other receiving the enzyme infusion.
"Looking back we both say, 'I don't know how we did it,' except you just do it," Frazer said. "One day at a time."
The FDA approved the drug in April.
Elle returned home to Memphis to receive her infusions at Le Bonheur Children's Hospital.
Micah, who lives outside of Baton Rouge, travels to Texas Children's Hospital in Houston.
"Toward the end of last week, we started to get concerned," said Micah's mom, Misty. "Oh no, what if the roads are flooded and we can't get there."
A missed infusion treatment would further the progression of the disease's damage to the brain.
But within 48 hours, Micah's family learned he could join Elle at Le Bonheur to continue his life-saving treatment.
"Family and friends have been huge in the process, but nothing compares to other families who are on this hard journey we are on," Misty said.
Both children are two of 100 people in the country fighting the rare and fatal disease.