In sports, a coach has control of a lot of things, but life usually doesn’t work that way.
Fort Mill High boys’ golf coach Steve Gribble knows that too well.
Gribble, who is retiring in June after more than 40 years of teaching, 28 of those at Fort Mill High, knew he wanted to spend time with his grandchildren when he retired. Now, that won’t be as easy as he had planned with granddaughter Charlee Rae – at least for a while.
Almost 13 months old, Charlee Rae will have to spend between seven and nine months at Duke University undergoing treatment for MPS I, known as Hurlersyndrome, a rare genetic disorder caused by a recessive gene.
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The body replaces used materials and breaks them down for disposal. Children with the disease are missing an enzyme called alpha-L-iduronidase, which is essential in breaking down the mucopolysaccharides. The incompletely broken down mucopolysaccharides remain stored in the body, causing damage if untreated.
The syndrome was discovered at Charlee Rae’s 7-month check-up with her pediatrician. Charlee Rae and her mom, Jessica, will stay at Duke University while undergoing treatment.
Charlee Rae’s 4-year -old sister, Mali, could also be a carrier of the syndrome and is being tested for it as well.
Treatment for the syndrome is long andincludes chemotherapy.
“They will essentially kill her genetic make-up,” Gribble said.
After that, Charlee Rae will undergo a stem cell bone marrow transplant. Donors for the syndrome have to be younger than 18. Mali Gribble could be a donor if she isn’t deemed a carrier of the syndrome.
“I hate to use this analogy, but it’s like they are changing the oil in a car,” Gribble said. “It can help her live a normal life span. It is a horrible thing if untreated.”
The treatment protects the heart, lungs and brain from the effects of the disorder. Other organs and tissues can also show benefits from the human stem cell transplants including the eyes and ears, liver, spleen, joints and airway.
However, many children still require aorthopedic surgeries despite a successful transplant. While the term cure should not be used, according to published references, stem cell transplants have the longest track record of any effective therapy for Hurler syndrome, including the ability to preserve cognitive function and development in the normal range.
Jessica and Russ Gribble, Steve Gribble’s son, are a two-income family and having Jessica out of work to stay with Charlee Rae will make things difficult for the family. Jessica, a middle school science teacher, has taken a leave of absence to stay with her daughter while in the hospital.
While insurance should pay for the majority of expenses, a GoFundMe page has been set up to help offset the cost of treatment that’s not covered. Gribble, an avid cyclist, is hoping to plan a ride to raise money for the family, among other things.
“It’s going to be tough on them,” Steve Gribble said.