Ten-year-old Addison Tarrence has big dreams.
"I want to be a fashion designer," said Addison. When she's not drawing dresses. Addison is keeping busy in other ways.
This year she tried adaptive skiing for the first time. "It's fun. I like going fast," said Addison.
Riding horses however is hands down Addison's favorite past time but if you ask her sister, Aspen she might say it's shopping. "Sometimes when we are in the mall and she sees the store Claire's, she's like run faster," said Aspen.
Addison has Spinal Muscular Atrophy, a disease that effects the motor nerve cells in the spinal cord.
She can't walk and while her body might be growing weaker all the time her sense of humor gets better everyday.
"Because sometimes when we're having a hard moment or whatever and she cracks these one liners and we all just crack up," said Kara Tarrence.
Two years Addison became completely dependent on her wheelchair. "I'm sick of being in it. I hate it," said Addison.
Addison's father, Josh says SMA is a disease that makes the simplest things difficult for his daughter.
"Kara and I made a decision when she was diagnosed that we weren't going to hold her back. We were gonna let her do as much as physically possible," said Josh Tarrence.
While the family loves and laughs a lot Addison's disease has taken it's toll.
"I'd take it from her in a heartbeat if I could and let her live a normal life but it's not an option," said Josh.
To make matters worse, Addison's care providers say there's no treatment for SMA, only ways to make it more manageable.
"I want her to be as active as she physically can be. I want her to be with her friends as much as she can be," said Sharon Budd, a Pediatric Nurse Practitioner at Gundersen Health System.
As for Addison's family, Budd says they should continue doing what they are doing because Budd says it's helping. The one thing SMA can not take from Addison and her family is hope.
Addison's mom says every year it gets harder to do things with her daughter because she's growing.
To fulfill Addison's wish to go to a water park, they family took turns carrying her up and down the stairs so that she could go on the slides.
Children's Miracle Network Hospitals raises funds for 170 hospitals across the country.
Locally CMNH supports children and their families live with devastating, life changing diseases.
To raise awareness of the work they do and the diseases affecting young children, Gundersen Health System chooses five new heroes to serve as ambassadors.
Children's Miracle Network Hospital Heroes attend events throughout the year helping the hospital raise money to help other families like Addison's.
To learn more about this year's Heroes or to make a donation go to http://www.gundersenhealth.org/heroes.