Five-year-old battles rare disorder that prevents her from eating, drinking

Five-year-old battles rare disorder that prevents her from eating, drinking

(WWBT) - Like most five-year-olds, Maddy Beckner loves a good tea party, adores Minnie Mouse, and is obsessed with the movie "Trolls" so much that the characters adorn the lunch box she brings to preschool every day.

But unlike other five-year-olds, there's no sandwich or juice box inside because Maddy cannot eat or drink anything.

"She's on a feeding tube 24 hours a day. She's been on for four years," said Maddy's mother, Ashley Beckner.

Maddy suffers from chromosome 17q12 microdeletion. Its effects vary from person to person, but according to the US Dept. of Health and Human Services, it can cause developmental delay and intellectual disability.

Maddy's mother, Ashley, said it affects how her daughter's body works, her growth and development, behavior, and her ability to learn. She also has autism.

"She'll hide her stomach from people she doesn't know. I think she knows she's different because she'll ask me why the other kids don't have a feeding tube," said Beckner.

Maddy wears a backpack connected to a feeding tube in her belly to allow her to be more mobile.

"Her attitude, she's so strong, she tries to do the best she can because she's been used to it her whole life," Beckner said.

Maddy was first diagnosed shortly after she was born. Today, she a has a full-time nurse who goes to school with her every day. She also has daily therapy sessions and weekly visits to different doctors to manage her condition, which causes constant bouts of vomiting.

"They don't know what to do next. So a lot of times, my daughter will stump them," said Beckner.

Not much is known about Maddy's disorder, which is why Becker is hoping to attend a conference about chromosome 17q12 deletion next week in Chicago.

As a single mother, Beckner is also hoping to find a larger support network.

"It's really basically all on me, and I try to stay as positive as I can," she said.

Maddy will start kindergarten next year, but as for her future, Beckner said it is uncertain because so little is known about her condition.

"I really want to learn more information about other issues that could be coming in the future for my daughter."

  • CLICK HERE for more information about how you can help Maddy and her family.

Copyright 2017 WWBT NBC12. All rights reserved