Liberty freshman with rare bone marrow disorder doesn’t let it hinder her from helping others

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LIBERTY, Mo. -- This week's Reaching 4 Excellence young achiever was born with a very rare bone marrow disorder called Diamond Blackfan Anemia. She has to get blood transfusions every month to survive.

Resilient 15-year-old Lily Soto has a simple mission.

"To save as many people as I can and to help them," she told FOX 4.

At six months, doctors diagnosed the Liberty High School freshman with the disorder. There are only 36 children born with it every year across the globe.

DBA, as it's called for short, is a disorder where the body does not produce enough red blood cells. Those cells are needed to carry oxygen throughout the body.

"She needs a gallon of blood," mom Le Ann said, transfusions she gets every three weeks.

She's been getting the transfusions her entire life.

"It's been hard because I've had to miss a lot of school. I get sick a lot and it's hard for me to catch up," Lily said.

"She can't fight infections very much or as well as other children. You catch a cold and she is out of school from three weeks," mom Le Ann said.

But her disorder isn't stopping her from helping others.

"I help people who need blood," she said.

Lily hosts blood drives throughout the state of Missouri. Over the past eight years, she says she's hosted 20 and tells FOX 4 that the response has been great.

"It makes me feel really good because people want to help out," she said.

She says since she started her push for collecting blood for Community Blood Center -- nearly 1,000 people have showed up, and rolled up their sleeves.

"I love her more than anything. She's my hero. I'm a shy person that doesn't speak up, but for her I will stand in front of a camera and talk and we just need help," mom Le Ann said.