KNOXVILLE, Tenn. — An East Tennessee grandmother said she is willing to do anything to help her grandchildren after they were diagnosed with a rare genetic disorder.
Patricia McMahan said her two grandchildren, Gatlin and Axile, were diagnosed with Hunter Syndrome. The rare disorder causes their bodies to hold onto excessive sugars and turns them into excessive fluids. The body does not produce enough of a specific enzyme that breaks down certain types of sugar, causing swelling in their organs and brains, and causing difficulty with movement.
"I'll do everything I go to do. I'll turn every rock, to see what we can do to save them," said McMahan. "To Gatline, I'm more of his mom now. Axile tells me, 'Grandma,' but they're my heart."
They're brothers and Axile is around 3 years old. Axile already weighs around 70 lbs. The average weight for his age is around 30 lbs. Gatline is around 18 months old and weighs around 34 lbs., while the average weight for his age range is around 25 lbs.
"We try to make sure that they have everything that they can ask for, because you don't know how long they're going to be here," said Sarai Gross, aunt of the brothers. "Everything that we do, we try to do together as a family so that way, we're all getting the memories together."
There's no cure for Hunter Syndrome, but the Cleveland Clinic says it can be treated with enzyme replacement therapy once per week. It also says the life expectancy for people diagnosed with it is between 10 years and 20 years.
The family plans to travel to Chapel Hill, North Carolina to seek experimental treatment. The family is in the process of raising funds to drive the boys out of state and make their home safe for the boys' care.
