Spinal Muscular Atrophy (SMA) Awareness Month Marked at Phillies Game
CHESTER COUNTY – Rep. Duane Milne (R-Chester) joined with local residents from the Families of SMA (FSMA), a support and advocacy group, at the organization’s fundraiser outing at Citizens’ Bank Park as the Phillies took on the Washington Nationals on August 24,
The event was part of ongoing efforts to mark August 2012 as Spinal Muscular Atrophy (SMA) Awareness Month in Pennsylvania. This designation was made official by passage of House Resolution 768. Rep. Milne introduced this resolution originally on behalf of Keith and Hillary Schmid of Malvern, whose 5 and ½ month old daughter, Zane, passed away from the disease.
Milne sponsored House Resolution 768 to raise awareness about Spinal Muscular Atrophy (SMA), the leading genetic cause of death in infants and toddlers.
“I am pleased to have been able to introduce this resolution to support Keith and Hillary Schmid, and hundreds of other families in Pennsylvania who have suffered the death of a child due to SMA. No family should have to endure such tragedy. It is my hope that this designation will be part of the solution of finding a treatment and cure for this debilitating disease,” observed Milne.
A severe neurological disorder, SMA generally manifests itself very early in life. The disease is marked by severe muscle atrophy and weakness, which degenerates the nerves of the spinal cord. The progression of the disease ultimately impacts a child’s ability to perform the most fundamental functions of life, including sitting, standing, walking, eating, breathing and swallowing. The life expectancy of a child with Type I SMA, as was the case with Zane, is only one to two years. Currently, there is no treatment or cure.
From a very personal perspective, Hillary Schmid explained, “Declaring August 2012 SMA Awareness Month in Pennsylvania was important to Keith and me because we want to inform people of this terrible disease. Until Zane was diagnosed, we had never heard of SMA, yet it’s the leading genetic killer of children.”
“Just as we did when she was alive, we will continue to take care of her, and by that, I mean sharing her story, showing her picture, and informing future parents of this horrible disease,” concluded Hillary.
For more information about SMA, and to learn about Zane’s story, visit www.sweetbabyzane.com
Rep. Duane Milne
Pennsylvania House of Representatives
Contact: Helen Hammerschmidt