Sanfilippo Syndrome is a rare genetic disorder. Children with Sanfilippo Syndrome are absent or are lacking in the enzyme used to break down sugar molecules used in building connective tissues in the body. The body stores molecules in the cells which causes progressive damage.

Talking about her 7-year-old son, Will Luthcke, “It’s only a rare disease until it happens to you. How rare is it when you are living it and experiencing it everyday,” Misty Luthcke said.

The Luthcke family of Wilsonville decided to begin The Will Luthcke Foundation to help raise money for research on the disorder, which currently has no treatment or cure and a life expectancy of around 10-20 years for those with the disorder.

Bryan, Misty’s brother, and Angie Burbank, have been a great supporter to the family and helps with putting on the fundraising events. One fundraising event the Luthckes hold annually is a fishing tournament on Lay Lake. The tournament takes place on Friday, Sept. 17, and begins at 4:30 a.m. There are prizes won and first place has a $2,500 payout.

Misty has also begun a secondary foundation with a group of parents, which wrote a $50,000 grant to a company last month.

“Treatment is still a few years away, and $50,000 may not be much when they need a couple million, but we are trying to accelerate the research being done,” she said.

You may see Misty driving around with a magnet on her car stating, “Please help save my son.” To those who stop and ask, she will explain how fortunate they are. Will still runs and enjoys time with his family and sister at the age of 7.

“Each birthday is bitter sweet,” Misty said. “But we are extremely blessed because Will still has his speech, which many children have never had speech or have lost by his age. He can’t tell us he loves us anymore, but he has the ability to show us.”

The Luthckes ultimate goal of fundraising is to find a cure for this devastating and fatal disorder. They also hope to raise awareness, promote research and improve the quality of life for those affected.

“We love living and experiencing everyday, and are trying to save our baby,” Misty said.

Kennedy Tolbert is the community columnist for Wilsonville. She can be reached at kennedytolbert@bellsouth.net.