Lyla Mertz was only 5 months and 24 days old when she died, but her memory lives on in handmade teddy bears,
Born on Sept. 30, 2009 to Steven and Jennifer Mertz of Kunkletown, Lyla seemed fine for a few months. Then she caught a cold and had a stuffy nose and became fussy.
After several trips to the doctor, she was admitted to the hospital with bronchiolitis, where she spent a week. She was still sick after discharge and continued to have cold symptoms for the next three months.
Her parents were concerned with her lack of muscle control and doctors decided to run some genetic tests. While most test results came back in the normal range within two days, there were some tests that took longer.
Meanwhile her cold got worse and she needed breathing treatments.
She was admitted to the pediatric intensive care unit and she stopped breathing on her own. The next day, on March 4, 2010, she was diagnosed with Spinal Muscle Atrophy (SMA)
She died soon after.
To cope with the loss of the baby, her 10-year-old cousin Katie Steigerwalt, and the baby's grandmother, Beverly Mertz, began making handmade bears to give to babies who are newly-diagnosed with SMA.
"Katie had a hard time coping with everything," said Mertz. "I thought it was something we could do together that would help take her mind off losing Lyla."
When Mertz undertook the project, she anticipated making a few bears a month, but she has been a lot busier than she thought she would be.
One of every 6,000 babies is born with SMA, a motor neuron disease, which affects the voluntary muscles that are used for crawling, walking, head and neck control and swallowing.
There is no treatment or cure for SMA, the number one genetic killer of children under age 2.
About 7.5 million Americans are carriers.
Since Lyla's death, her parents have raised between $20,000 and $25,000 to help with research for a cure.
The making of the handmade bears became a family activity when Rachel Mertz, the baby's aunt, joined in to help.
The operation begins with Rachel tracing out the designs and pinning the fabric together.
Beverly cuts and sews the bears, while Katie and Tracy, another aunt, stuff them.
To keep the spirt of Lyla alive, Beverly became involved in the Families of SMA organization.
She even organized a support team in the cause. She also teamed up with Lehighton Area High School Family and Consumer Science Classes, which made a bin full of stuffed teddy bears to be donated to the families affected by SMA.
Also the students made a bin full of bears that were donated to Lehighton Ambulance personnel, who will use the bears to comfort young children during emergencies. FCS instructor Julie McHugh donated the supplies.