Tenley Thompson, a five year old girl from Pennock, Minnesota with Krabbe Leukodystrophy, isn’t letting her disorder stand in the way of her living. In spite of not being able to walk and talk on her own, she, with the help of her parents, went skiing on Sunday.

Tenley was diagnosed at age two with this degenerative, and often terminal disease, and was expected to live only six more months. Tenley’s dad Trent said “We decided that this is not going to set us back, we’re going to keep living.” Her parents decided to create a bucket list to give Tenley positive, meaningful experiences before she passed.

Three years later, Tenley has been to Disneyland and Disneyworld. Next item on the list is a family cruise, and swimming with dolphins. Even though her nervous system doesn’t allow her body to respond, her cognitive abilities allow her to engage in and enjoy the world around her.

“We know she’s having a blast, by the way she’s smiling, by her eyes. She’s excited,” Emily said, after taking Tenley skiing.

Tenley’s will to survive and desire to live fully has been an example to her parents.

“She shows us every day that life is short, live it to the fullest,” Trent said.

Hannah Joy is a student and childrens' literature enthusiast. She enjoys singing, nature walks, and hummus. She hopes to bring joy and truth into the world through the written word.