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North Carolina Fact Sheet

Two years ago, Anna James learned that her son Emmanuel had a rare neurodegenerative condition called metachromatic leukodystrophy (MLD). Since MLD is genetic, her youngest child, Samuel, also needed to be tested. The results came back and confirmed the worst. At just one month old, Samuel, who looked like a perfectly healthy baby boy, was diagnosed with the same fatal condition as his older brother.

Emmanuel’s condition has progressed very rapidly, and he has lost the ability to walk, talk, eat and more. He has been in the hospital for almost a year and is now on a respirator.

His younger brother, Sammy, received a bone marrow transplant when he was four months old to try and slow the progression of his MLD. Sammy spent his first year in the hospital and has to return frequently for medical treatments. For Anna, this means weekly trips to the hospital, a nearly
three-hour roundtrip drive, while also trying to find childcare for her two older children.

MLD has put tremendous strain on the James family between long hospital stays, frequent trips across the state, and the financial burden of caring for two medically complex children. Anna is grateful for little moments of love between the two brothers and their siblings, especially they visit Emmanuel in the hospital.

 

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