People News

Foundation gives resources on rare pediatric diseases

2.0 from 4 votes
Sunday, June 01, 2008

Madison Smith has experienced more in her 11 years of life, than some people have in a lifetime.

She is already an author, a teacher and the inspiration for a non-profit foundation.

What she said she wants most is just to be a kid.

"I just live a regular life, I guess, nothing is really different," said Smith.

That may be how this incredible stoic young girl feels but the fact is she has been in and out of hospitals ever since she was three years old, battling an inoperable tumor growing from her neck to her stomach called Neurofibroma.

Madison`s parents tried desperately to find out more about her disease, but because her condition was so rare little information was available.

"I felt really alone, frightened to make decisions, medical information was not updated so that scared me," said Smith`s mother, Marcy Smith.

Refusing to give up, Madison`s mom started the Madisons Foundation, which runs a Web site providing information and resources for parents on 524 rare pediatric diseases, written by medical students and doctors. The site also connects parents to each other.

"Having parents have a place to go to, if their child doesn`t have one of these top ten disease to know there`s a community, online free community to get this information and if you can`t get it on the website we`ll get it for you," Marcy said.

Madison did her part and she wrote a book on how to be a doctor to kids. She has presented it to doctors and medical students.

"Don`t tell kids tests like IV`s don`t hurt. Tell them it will hurt, a little bit and it will be over soon. Don`t talk about kids tumors in front of them, it hurts their feelings," said Madison.

"If you don`t like the hospital clothes like I didn`t, ask your mommy or daddy to bring your pj`s from home," Madison said.

Madison suggested that the foundation put on a fundraiser that would get kids involved. Thus began the "Kids For Kids" annual walk/run.

"If there are any kids out there don`t be scared. And best of luck to you!" said Madison

Hensel said because of Madisons foundation, you can find the information resources and doctors you need.

Proceeds from the walk goes towards research for rare pediatric diseases which normally receives little attention or funding.

The Kids to Kids Run/Walk towards Cures For Kid Disease will take place Sunday, April 22, at Beilensen Park in Encino. You can register onsite.

Web site:

Copyright 2007 by and KNBC.


2.0 from 4 votes
Free Newsletter
by Abidemi Uruejoma
by Abidemi Uruejoma
by Abidemi Uruejoma