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Samuel and Autumn Ford found out their son Shepherd, 7, had a rare genetic condition called adrenoleukodystrophy, or ALD, when he was born. After testing, Fords’ older son, Ransom, 10, was diagnosed as well. ALD can cause the buildup of very long-chain fatty acids in the brain. If a buildup occurs, it can cause damage to the myelin sheath, the membrane that covers nerve cells in the brain and spinal cord. This can lead to lesions in the brain that can cause severe symptoms.
For children, symptoms typically present between ages four and ten. If left untreated, ALD can lead to loss of vision, loss of hearing, seizures, and more. In some cases, it can even lead to death.
The Fords travel to Carmel multiple times per year for appointments with their pediatric neurologist, Dr. Laurence Walsh, at Riley Pediatric Neurology on N Meridian Street. They also visit Riley Children’s Health at IU Health North for twice-yearly MRIs as a preventative measure.
“We’ve just had really great doctors, really great nurses,” Autumn says. “It’s been fantastic. The kids know who they’re going to see when they come in, so I think it helps them.”