'Fighting For A Cure For Our Babies': Lockport Mom Raising Funds For Daughter's Battle Against Rare Disease

LOCKPORT, IL — Lockport mom Maria Nelson will hold her first annual lemonade stand fundraiser on Saturday to support her 1-year-old daughter, Lily, who has an extremely rare neurological disease.

The fundraiser will support research for SLC6A1. This rare disease causes severe developmental delays, seizures, intellectual disabilities, autism, movement issues, mental health challenges and more, Maria told Patch.

100 percent of proceeds from lemonade stand profits will be donated to SLC6A1 Connect, which is a parent-led nonprofit.

The fundraiser will be held from 11 a.m. to 3 p.m. on Saturday at Silo Bend Park and pavilion.

Several local businesses are also helping sponsor the event, Maria said. S&T Pizza is donating pizzas, and three local Chick-fil-A locations have donated about 40 gallons of lemonade. Other businesses including Costco, Public Landing, Taco Patio and Kenwood Liquors have contributed gift cards or matching donations for the fundraiser.

Maria said Lily was diagnosed in December right before she turned one.

"Right now, funds are the only thing standing between Lily and kids like her receiving treatment that could ultimately cure her neurological disorder through gene replacement therapy," Maria said. "When we were told that funds were the only thing standing in the way of helping our daughter, we didn't hesitate to join other families in fighting for a cure for our babies."

Maria said her family started a fundraising page in January and raised almost $130,000. It would cost about $10 million to treat the next 10 children in two gene therapy clinical trials, so that the treatments could be approved by the FDA to then treat all kids.

"Our community is really coming together to support our cause and it is events like this that give us hope," Maria said.