Sports

The Story and Purpose Behind Zane's Run

At a community run on Sunday, a local family is hoping to lessen the devastating effects of a disease that affects infants.

In 2009, Keith and Hillary Schmid lost their 5-month-old daughter, Zane, to type I Spinal Muscular Atrophy, a genetic disease that did not affect Zane's twin sister Avery.

That year, the Schmids organized , a 5K held at Sugartown Elementary School. The proceeds of the run helped supply informational packets and car seats to families facing the disease. The third annual Zane's Run will take place Sept. 25 this year.

View the attached video to learn more about the Schmids' story.

Find out what's happening in Malvernwith free, real-time updates from Patch.

The Schmids hope to raise awareness and encourage people to be tested for SMA.

"Both parents have to be carriers of the disease to have a child with SMA," Hillary Schmid said. "[Two carriers] have a 25 percent chance of having a child with SMA, a 50 percent chance of having a child be a carrier, and the other 25 percent chance that the child will be unaffected."

Find out what's happening in Malvernwith free, real-time updates from Patch.

One in 40 people is a carrier of the SMA gene, she said, and finding out requires is a simple blood test. If both parents are carriers, prenatal tests can be performed.

According to the National Institutes of Health, "There is no treatment for the progressive weakness caused by the disease ... The lifespan in SMA type I is seldom longer than 2 - 3 years."

The Schmids are optimistic that SMA will be cured one day, which is why they're focusing their efforts on combating its devastating effect on families now. They hope the information booklets they are helping to distribute will prevent other families from having to experience the same desperate search for information, doctors and support they undertook at the same time they were coping with the diagnosis.

And the car seats, which resemble small beds, cost between $800 and $1,000 each. Each one purchased through Zane's Run bears the name of their late daughter.

For details on Zane's Run, view the .


Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

We’ve removed the ability to reply as we work to make improvements. Learn more here

More from Malvern