A Dinner With The Angels | Lubbock Avalanche-Journal

Alstrom’s syndrome may cause a lot of different harmful effects to a child’s body, but the disease doesn’t hold Bryce Johnston back.

Bryce, now a 10-year-old in the fourth grade, stays busy in numerous of extra curricular activities, said her mother, Cassie Johnston, founder of the Lubbock-based Alstrom Angels non-profit organization aimed, in part, at raising awareness about the disease.

Alstrom syndrome is one of the rarest of rare diseases and not many people have heard of it, including doctors, said Johnston.

There are only four children who have Alstrom’s in Texas, including Bryce.

“There are roughly 630 kids alive in the world with it,” the mother said. “(Alstrom) is genetic. We all have the Alstrom gene. You get a copy of every gene from your mom and every gene from your dad. It just so happens that my husband and I have one healthy Alstrom gene and one mutated Alstrom gene. Bryce happened to get both.”

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