Louisville mom forms advocacy program after losing daughter to rare disease

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by Renee Murphy

WHAS11.com

Posted on May 16, 2012 at 5:48 PM

Updated Wednesday, May 16 at 6:02 PM

LOUISVILLE, Ky. (WHAS11) -- There's nothing better than a baby's smile.

“God gave her to me for a reason I learned so much from her in the short time she was here,” Leslie Rader said.

Lauren, Leslie Rader's daughter, was born in 2003 and died before her first birthday due to a rare disease known as EB. It's a rare genetic skin disease that only effects 1 in 50,000 births.

Leslie said she just knew she could beat the odds stacked up against her.

“I don't lose so I was going to beat this disease.  At the time of course it was all new to me and I didn't know as much as I know now because she's taught me so much through all the years I've been continuing the mission to help others,” Rader said.

Lauren's disease caused her to blister easily.  Her skin would peel off by a simple touch, and the disease was internal as well.  EB can cause a babies eyes and throat to blister.

“I carried my daughter around on a pillow because she was so fragile and she was more comfortable that way,” Rader said.

Leslie has now started a new family advocate program to help families who have babies with this rare disease.

“Raising children takes a village,” she said.

And she's not just reaching out to families dealing with EB locally and nationally.
Every year she holds a fashion show.  The show brings people in and she gets to share her message of EB.

“EB is such a little known disease any awareness and spreading of information is going to be very beneficial to our group of families and caregivers so yes awareness I think speaks volumes,” Rader said.

And Leslie hopes people are listening.

For more information about Leslie's program, click here.

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