Honor donates money for SMA research

Like many other parents, Jimmie and Mindie Kazlauskas never heard of the term “Spinal Muscular Atrophy” until a doctor told them the name of the disease that was crippling their infant daughter, Maggie, nearly three years ago.

And, tragically, even if they had known that information earlier, it wouldn’t have prevented the disorder from eventually claiming their loved one’s life, at only 11 months of age.

The Kazlauskases and the staff at the Dowagiac Honor Credit Union branch have recently made a small step in helping to prevent a similar fate from falling upon other families. The branch made a $500 donation last week to the Families with Spinal Muscular Atrophy, which is devoted to finding a cure for the yet untreatable genetic disease.

“Having experienced the devastation that SMA is capable right here within our own community it feels great to give back to an organization that is dedicated to fighting this genetic defect,” said Janie Reifenberg, Honor’s Dowagiac branch manager.

Reifenberg, who is Jimmie’s aunt, and her staff have been raising funds for the donation for the past several months through the Powered By Honor Casual For A Cause program, which allows employees to donate money in order to wear jeans on Friday.

“It’s a personal thing for us and for her,” Jimmie said.

Since losing Maggie, Jim and Mindie have learned even more about SMA, which affects around one in 6,000 infants, and is the leading genetic cause of death in newborns. The disease results from the defect in a vital protein-producing gene.

“SMA is a really rare disease for infants,” Mindie said. “It’s like muscular dystrophy, as the child doesn’t have any muscle strength.”

The couple noticed problematic signs in Maggie when she was only a few months old, when they saw that she could not raise her head. After a number of failed diagnoses from other physicians, a trip to the John Hopkins hospital in Baltimore confirmed their worst fears; that their newborn daughter would never get better.

Maggie was diagnosed with type 1 SMA, which typically claims the life of the child within the first two years.

“Right now, there is no cure for it,” Jimmie said. “All the doctors can do is try to ease their pain.”

The sorrow they experienced due to the loss of Maggie has made them cherish the little things even more while raising her sister, 2-year-old Josie.

“You take for granted the things that toddlers can do, like sitting up and smiling,” she said.

When Reifenberg told them that her company was making a donation to find a cure for SMA, the couple was excited about the fact that a local organization was contributing to the cause. More importantly though, they hope that their efforts help spread the awareness amongst neighbors about the disease.

“If more people realized what was happening, they would probably donate,” Jimmie said.