“She was an athlete, smart, everything,” says Heather Malsin of her daughter, Julia, who became sick out-of-the-blue in 2011.

“The doctor took us into the office and said, ‘Your daughter has aplastic anemia.’ What does that mean?” adds Julia’s dad, Mike.

The rare condition, which strikes about 800 Americans each year, involves bone marrow failure. The 13-year-old remained brave, enduring chemotherapy treatments and even surgery to fight infection in both legs.

“She was always so thankful, thankful to us for being there, thankful to her doctors and nurses,” says Heather. During this time, Julia noticed that some kids in the hospital spent significant time alone because their parents had to work to pay the bills. “It really upset her, especially at nighttime because there were signs on the door, ‘I’m afraid of the dark. Please make sure my light is on.’ So, she’d say, ‘Mom, can you go outside and check?'” remembers Heather.

Julia, called Jule by her loved ones, lost her battle one year after diagnosis.

Her legacy lives on in Julia’s Wings, a foundation providing financial assistance so moms and dads can stay by their child’s side.

“We’ve helped over 200 families and we’re now partnered with over 60 hospitals,” says Heather. The foundation has raised an astounding $240,000 through annual events like Evening of Hope, coming up September 14th.

The Malsins are pushing for more research and better treatment so fewer families endure the pain they’ve felt after losing Julia. “At the very end when I knew she wasn’t going to make it, we promised her we would never stop fighting this disease, for as long as I’m here,” says Heather with emotion. “This is just us keeping that promise.”

Every year, the foundation also hosts a blood drive, a fundraising pumpkin run and is involved in an awareness week to teach people about the devastating condition. It’s all in honor of Julia.

Click here for more information about Julia’s Wings and the upcoming Evening of Hope.