How to help a Savannah 7-year-old diagnosed with ALD
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The grandmother of a Hesse Elementary School student suffering from a rare genetic disease is asking for the community’s help.
Leigh Griner’s 7-year-old grandson, Grayson Cronin, was recently diagnosed with Adrenoleukodystrophy (ALD). A rare genetic disease primarily affecting boys, ALD, if left untreated, deteriorates the brain rapidly and ultimately leads to a vegetative state. The subject of the 1992 film “Lorenzo’s Oil,” ALD typically
claims a diagnosed boy’s life within 10 years of diagnosis.
Grayson’s brain MRI revealed that he has cerebral adrenoleukodystrophy, the most severe form
of ALD. If Grayson doesn’t receive the necessary treatment soon, he could lose his vision, hearing, and eventually all motor function over the next six months to several years.
There is a potentially life-saving bone marrow transplant via the University of Minnesota. While that process is expected to be approved and covered by insurance, there will be many uncovered costs, such
as experimental drugs and nutritional supplements, in addition to travel and lodging during his
treatment and recovery periods. Other options within and outside of the U.S. include gene therapy and supplemental medications, such as Lorenzo’s Oil, that can help slow down the progression of the disease in the meantime.
You can help by donating to a GoFundMe, “Help Grayson’s Fight Against ALD” here.
Donations in any amount are welcome.
“I also ask for prayer and encouragement for my son, Jonathan, who is a single father to Grayson and Nathan,” said Grayson’s grandmother Leigh Griner. “We are thankful that Jonathan can work remotely, but life has been emotionally overwhelming, and his work has suffered. So, I want to do anything possible to lighten his load in the upcoming months of treatments and uncertainties.”