Everything started with what looked like a common children’s condition. Difficulty breathing sent Davasia and her mother, Melanie, to the hospital for what doctors at first diagnosed as asthma. But after a round of lab tests to see why medications weren’t helping Davasia’s condition, Melanie got the call any mother dreads. She was told to bring Davasia to the emergency room immediately.
Davasia’s closed throat was a symptom of Wegener’s granulomatosis, now known as granulomatosis with polyangiitis (GPA), a rare autoimmune disorder that attacks the organs and can cause kidney failure. Davasia needed a kidney transplant.
Suddenly, at just 10 years old, Davasia was thrown from her life as a kid into life as a patient battling a life-threatening illness. Her days went from school and gymnastics to doctor’s appointments and dialysis.
“She just wanted a normal life. It was kind of in-your-face ‘you’re sick.’ You can’t do this, you can’t do that, you shouldn’t do this, you shouldn’t do that,” says Melanie. “She said, ‘Mom, I just want a normal life.’”
Davasia needed dialysis three times a week to stay alive. She wasn’t able to attend school regularly or spend time with her friends, and when she wasn’t getting treatment, she didn’t have the energy to do anything she loved.
“I didn’t want to do anything,” says Davasia. “I would just come home and sleep.”
She also had to quickly learn a lot about herself, her body, and nutrition. She is now impressively familiar with portioning and nutrition labels because they have controlled her life for more than a year.
“I had a diet, and it was really hard to follow because everything had salt in it, and I was on a low sodium diet,” says Davasia.
The meals Davasia wanted to eat were off limits, and Melanie couldn’t seem to find anything with the right sodium content that Davasia wanted to eat.
“I couldn’t get her to eat anything,” says Melanie. “There was nothing she liked and nothing she wanted.”
Then their social worker referred the family to Project Angel Heart.
“Oh my goodness, she liked it!” Melanie says.
The meals helped Davasia find foods and portions that worked for her diet and weren’t a chore to eat, so important for a kid who needed strength to fight a critical illness. She began eating again.
“I would just look in the refrigerator and find the meal, and it was a lot easier because we could make it and I could eat it. I didn’t have to find something that I liked or didn’t like,” says Davasia.
Davasia had a successful kidney transplant in March of 2019. She is no longer receiving Project Angel Heart meals and has wasted no time getting back to being a kid, already climbing fences and doing handstands. She is thrilled to be starting at her new school, an expeditionary school, after being accepted earlier this year and plans to pick up where she left off in gymnastics.
“Be careful,” Melanie warns as Davasia hurries outside to demonstrate with a backwards cartwheel off the porch. Just a normal kid.