Madilyn Grace Morgan's mother Donna describes her as "a little princess." Her dad Tony says he always thought she would have been a teacher. She loved playing school and loved teaching her little sister how to read and write.
Maddie was only six years old when she got sick. What was first diagnosed as "asthma" ended up being something much more serious. Something called Pulmonary Veno Occlusive Disease, a disease so rare that her doctor - a specialist of twenty two years - had never seen a case before. Tony explained that PVOD only affects a few people a year and it is always fatal.
Unfortunately, Maddie was no exception to that rule. On November 23rd, 2005, she passed away.
"It's unimaginable, it really is." Donna describes.
Heartbroken, Tony and Donna knew this was a turning point in their lives. They could let this defeat them, or take something negative and try to turn it into a positive.
So they started "Butterflies for Maddie." Each year, they host a 5k race and other various fundraisers, including selling paper butterflies and other memorabilia.
"Keeping this going for me is like Maddie is still here." Donna says.
Not only is "keeping this going" helping Donna and Tony, but it is helping others as well. Over the past five years, the Morgans have raised over fifty-thousand dollars for PVOD research and scholarships for local students. But Tony says they couldn't do it alone.
Tony says if they are able to help one person through their fundraising, it will all be worth it. He also says without the help of others, Butterflies for Maddie wouldn't be possible "So without the help of the staff that we have, none of this would be possible. Really, they're the heroes, that's what I would say."
We honor Tony and Donna Morgan as this week's Hometown Heroes. If you would like to become involved with Butterflies for Maddie, please visit their website at www.butterfliesformaddie.com.
If there is someone you see as a hero, please nominate them under the "Hometown Heroes" link.
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Posted: 06/15/2012 - Board of Regents approves increase.