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Illinois mom fights for newborn screening for genetic disease

An Illinois mom spent the day in Washington, D.C. meeting with lawmakers. Shelby Lyon from Aledo is fighting for newborn screening that would detect MPS or Muco...
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WASHINGTON, D.C. - An Illinois mom spent the day in Washington, D.C. meeting with lawmakers. Shelby Lyon from Aledo is fighting for newborn screening that would detect MPS or Mucopolysaccharidosis.

Lyon's 8-year-old son Owen has one type, known as MPS IIIa, or Sanfilippo Syndrome. That means he was born without an enzyme that clears "trash cells" out of his brain. Over time those cells build up and damage the brain. The current life expectancy is 10-20 years of age. Early detection would save families the heartache of visiting dozens of doctors trying to find an explanation for their child's symptoms.

Lyon serves on the board of the National MPS Society. Monday, May 20th, 2019, She met with Rep. Rodney Davis (R, Illinois) as well as aides and staff members for other Quad Cities area lawmakers.

"It felt like I was on top of the world telling our story and representing all the other families going through this disease with us," Lyon explained. "I want to remind everyone that you can make a huge impact by never giving up and sharing your story. "