8-year-old with rare lung disease raising money, awareness - Toledo News Now, Breaking News, Weather, Sports, Toledo

8-year-old with rare lung disease raising money, awareness

Posted: Updated:
Maddie on the soccer field Maddie on the soccer field
(Toledo News Now) -

Maddie Morgan looks like any other 8-year-old, but she's battling a lung disease that fewer than 200 people around the world have been diagnosed with.

"She just seemed to work really hard at breathing, but she still looked healthy," said Michelle Morgan, Maddie's mother.

Maddie was like that from the minute she was born, but everything else seemed normal, for awhile.

"She then started to lose weight," Michelle said. "She was not gaining weight because she was using so much of her energy to breathe."

At 11 months old, Maddie was hospitalized with pneumonia, but her CT scans and X-rays did not look right. After numerous misdiagnoses, the Morgans started doing their own research.

It wasn't until she was three years old that Maddie was diagnosed with neuroendocrine hyperplasia of infancy, or NEHI.

"She traps air," explained Michelle. "Sometimes the alveoli in her lungs hold stale air, and when that happens, she is not able to completely let go of all the bad air and then inhale a fresh breath of air."

There is no real cure for NEHI at this time, but for Maddie, sleeping with oxygen helps. And it keeps her active. She plays soccer and does karate.

"I like how my coaches are always tough on me, even though I have it," Maddie said. "They still know if I need a break, I need a break."

Maddie and her older sister Mackenzie are also raising awareness and money to make a difference. It started as an idea to make money at a neighborhood garage sale.

"We have rainbow loom kits that make bracelets out of little rubberbands, and we decided we'd do that," Mackenzie said. "Then I decided that maybe we could do it for a fundraiser to raise money for her lung disease."

They sold the bracelets for 50 cents, but once word got out why they were selling them, the donations came pouring in. Now the two sisters are donating more than $500 to research.

Mobile users, click on the "Video" button in the app to watch this story. Download our app here.

Copyright 2013 Toledo News Now. All rights reserved.