Finding a cure for Daisy: local mom creates awareness for daughter's rare disease

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POSTED: Tuesday, February 18, 2014 - 6:07pm

UPDATED: Wednesday, February 19, 2014 - 10:01am

Imagine travelling half-way across the country to treat a rare disease there's no cure for. Well that's reality for 4-year-old Daisy Prescott, and that's why her mom wants to do her part to help find a cure.

Daisy loves dancing and singing.

"Because I want to be a superstar!" Daisy exclaimed.

But Daisy already is. She's only 4, but she's dealing with something most people have never even heard of.

"It's called Juvenile Dermatomyositis," Daisy said.

Or JDM for short. It's an autoimmune disease that affects one in three million kids across the country. Daisy was diagnosed a year ago, and her mom Kristen said most doctors didn't really know where to start.

"She had wort like things on her hands. She also had a red rash on her face that the doctor said was fifths disease then eczema," Kristen explained.

Then they finally got an answer when Kristen took Daisy to see a dermatologist.

"My husband, myself, and my mom started doing research, and basically that night when I started looking, I knew that that's what it was," Kristen said.

Now every three months Daisy goes to Chicago to see a doctor who specializes in JDM. Even though Daisy has so much energy, she has to get chemotherapy and steroid shots weekly, and it's not easy.

"She has been affected. She gained a lot of weight initially, and it makes her very moody," Kristen said.

So, Kristen decided to start selling bracelets and shirts to raise awareness and to raise money to find a cure.

"I discovered almost immediately that I had a knack for fundraising especially when it's fundraising for something important that you believe in so much," Kristen said. "Cure For Daisy has always been a hashtag that I use on social media, and so I just designed a logo, if you will, and now I feel like we could do something big with that."

Since they started fundraising, they've raised more than $15,000, and Daisy has some advice for other kids dealing with a disease.

"I would tell her that you need to get shots and be brave," Daisy said.

To learn more about Daisy and how you can help you can go to www.facebook.com/thedaisynews

To learn more about Juvenile Dermatomyositis http://www.curejm.org/

Click here to "like" this reporter on Facebook.  

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So proud of Daisy. To futher help, all of my award-winnin children's book are part of a CureJM Fundraiser at sbpra.com/curejm, where 50% of the cost of the books goes to the CureJM Foundation to help find a cure for Daisy and others like her. (Daisy's grandmother bought all of my books for Daisy!)

Seriously, the sweetest little angel in the world!
Team Daisy!!!! <3 <3 <3 <3 <3

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