5K Run/Walk honors memory of Macie Majeres

A rural Le Mars family is honoring the memory of its infant daughter with a 5K run/walk set for Saturday, Aug. 15, in Le Mars.

Macie Kate Majeres, the daughter of John and Katie Majeres, was born Feb. 15, 2007 and was diagnosed with Epidermolysis Bullosa (EB), a rare genetic skin disease, shortly thereafter. She died at age of 6 months.

Katie Majeres explains that children with EB are known to be "butterfly babies" because their skin is so fragile, like the wings of a butterfly.

The Majeres family got help in coping with Macie's EB from the DebRA organization.

"They provided special clothing and the bandages we needed," said Majeres.

DebRA of America is the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for EB and providing information and support for people with EB and their families.

Now the Majeres family is ready to help the DebRA of America by sponsoring MacieFest 2009, which includes an EB 5K Run/Walk.

This is the first time for the event, and Majeres said the family incorporated both a walk and a run so more individuals are able to participate.

"Strollers are welcome, too," Majeres added.

The run/walk will be start at 9 a.m at the Le Mars Municipal Park Shelterhouse and follow the walking trail around the golf course. Registration is at 8 a.m. at the shelterhouse.

There is a registration fee of $20, and walkers/runners are encouraged to get sponsors for themselves as way to raise money.

Overall sponsors for the run/walk are Majeres Foodtown, Remsen, American Bank and Dairy Queen.

Those interested in participating or making a donation may contact Majeres at 540-2173. Checks should be made payable to DEBRA.