Stepping Marks for Aubree honors local toddler who died from rare disease

STANLEY, Wis. (WEAU) -- After losing their two year old daughter to spinal muscular atrophy, a family in Stanley is standing strong to help others. The family wants to help raise money and awareness so that others don't have to go through what they did with little Aubree.

They have raised thousands of dollars over the last few years to help with research to lead to a cure for spinal muscular atrophy. Even though Aubree is no longer with them, the family is honoring her memory at this year’s Stepping Marks for Aubree event.

Deanne LeTendre and her husband have created a special space outside their Stanley home. "It kind of gives you a little peace,” LeTendre said. It is all to honor little Aubree. "She couldn't verbally talk to us, she had words but her faces and facial expressions she let you know, she was sassy, she did not stop fighting ever, she did not give up,” said Kayla Weltzin, Aubree’s aunt.

Aubree was diagnosed with spinal muscular atrophy, which is a disease with a life expectancy of less than two years. "She is a blessing to us, she was a blessing. We are very tight knit and she brought us together way more,” Weltzin said.

While Aubree was a fighter, she passed away in February. "She did make it past her 2 years and she was a little fighter the whole time, she showed us that you could do anything with your life,” Weltzin said.

Fighting for a new cure and treatments to help others is why Aubree’s aunt and mom are now planning their second annual Stepping Marks for Aubree 5k walk/run. "It's bittersweet but I feel this is something she would want,” LeTendre said.

Their goal for this year's walk is sticking together even when times are tough. "There is still families going through this that we want to raise money so that they don't have to go through the same things we did,” Weltzin said.

Last year's event raised $7000 for the Muscular Dystrophy Association, the same organization that was a huge help for Aubree and her family. "It's the best; we wouldn't have been able to do any of it without the support,” LeTendre said. And now they are returning the favor to all of the other families. "Keep fighting and keep doing everything that you can,” Weltzin said.

A message they want to live out in honor of Aubree with her legacy leading the way for the second annual Stepping Marks for Aubree. "There is probably going to be tears, there is going to be smiles, there is going to be laughter but the best thing is that we are all going to be together,”LeTendre said.

The FDA has approved a new gene therapy to treat patients with spinal muscular atrophy, which could help many kids like Aubree in the future. For now, Aubree's family is hoping to raise money for others to get this new gene therapy and other necessities.

Stepping marks for Aubree is taking place this coming Saturday at Stanley-Boyd High School. Registration for the walk starts at 9:30 a.m. and the 5K walk/run will begin at 10 a.m. There will also be bingo, bucket raffles, bean bag tournament and a spaghetti dinner. The event is scheduled to run from 9 a.m. to 3 p.m. All of the proceeds from the event will go to the MDA.