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Baby diagnosed with rare genetic disease
By: WJAC Web Staff
BELLWOOD, Pa. -- An 18-month-old has a rare genetic disease called Nonketotic Hyperglycinemia (NKH) that affects less than one in 60,000 children each year. Children who are diagnosed with NKH cannot metabolize the amino acid glycine.
One family created a worldwide network for the support of Miles Brunner.
Since Brunner's diagnosis his family has brought together hundreds of families also affected by the disease.
"No matter what county you're from, no matter what financial riches you have to battle, an incurable disease is quite a common denominator," said Miles' grandmother, Penny Brunner.
The Brunner family started a nonprofit called Smiles for Miles, raising money for treatment and research on the disease.
A cookbook is being sold with 150 recipes submitted by families from all over the world who are affected by it. They are being shipped internationally for $24 and they are on sale locally for $15.