Hayden is a blue-eyed, blond-haired four-year-old who captures the hearts of everyone she touches. A little princess. Angel. These are the nicknames used by friends and family to describe Hayden, a sweet little girl who loves to be outside, take baths and cuddle up to her soft blankies and stuffed lamb. Angel or princess, Hayden is a child who deals with a difficult, incurable disease with poise and grace.

Hayden’s parents starting questioning their pediatrician when they noticed that Hayden wasn’t reaching important development milestones at 15 months of age. While she could pull herself up and walk with the help of something to grab hold of, such as furniture, she wasn’t able to walk on her own and showed other signs of regression, such as disinterest and difficulty seeing. It wasn’t until after nearly a year of testing, doctor’s appointments and concern that Hayden’s parents learned that their daughter has Batten disease, a rare neurodegenerative disease that’s inherited.

Each day is a challenge as her health declines, but Hayden’s family cherishes every moment they can with her. Hayden’s siblings, Amanda, 16, Bailey, 7, and Tyler, 2 ½ months, enjoy spending time with their sister and are very active in sports and school activities. Since her diagnosis on January 28, 2008, they’ve formed Hayden’s Batten Disease Foundation Inc. and given $115,000 to research to help find a cure for Batten disease. They’ve also awarded several scholarships to students pursuing a degree in the medical field.

“By fundraising, we feel like we are doing something,” said Christine Thelen, Hayden’s mom.  “If we can't help Hayden, maybe we can help another family so they never have to go through what we have been through."

"Fundraising has also given our family an opportunity to do something rewarding together," Christine added.

To learn more about Hayden's story or Hayden's Batten Disease Foundation Inc., click here.

We'd like to give a special thank you to Hayden's family for allowing us to share their incredibly story with others.