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Life Lessons: Connecting parents, saving lives

By Nancy Werteen, Anchor / Reporter, NWerteen@wfmz.com
Published On: Jul 11 2013 04:00:00 AM CDT

Life lessons Parents share info on rare pediatric diseases

There are more than 25 million people in the United States battling a disease classified as rare and 75% of them are children.

In fact, 30% of rare disease patients die before the age of five.

Many times, it's because patients and parents can't get the right diagnosis, quality information, and appropriate medical care.

Today we introduce you to one mother who is connecting parents across the globe in order to save lives.

Madison Smith is a rare young woman with a passion to help the very youngest patients.

"I just want kids to be informed that they're not alone in this process," says Madison Smith.

Madison was born with a rare, inoperable tumor growing from her neck to her stomach. She wrote Kid to Kid to help others like little Alexis.

"I wrote a book because when I was in the hospital I didn't like the way I was being treated," explains Madison.

Her mother wants other parents to also find the support that was hard to find when her daughter was diagnosed.

"I realized we were by ourselves," Madison's Foundation Founder Marcy Smith says.

Marcy Smith started www.madisonsfoundation.org.

On the site, parents find information on 550 rare pediatric diseases written by medical professionals and updated regularly.

There is a glossary of medical terms and a way for parents to share with other parents dealing with the same rare disease.

We went on the site and asked people to share their story.

A mother in South Carolina says it was nice to help another parent going through the same thing as her son. Emails of appreciation came back from San Francisco, Idaho, India, and Australia.

Marcy says parents who have a child with a rare disease should always keep searching for new information and always plan for the future.

"Treat your child like they're living, not like they're dying," says Marcy.

Madison is headed to college in the fall. This is her second book.

Her first was penned when she was just 10. That one was targeted towards doctors informing them what not to do when it comes to their youngest patients.

The website is www.madisonsfoundation.org and it's completely free.