Special fundraiser planned for little girl with rare disease

Posted at 10:07 PM, Jul 29, 2018
and last updated 2018-07-29 23:28:22-04

HUDSONVILLE, Mich. -- A little girl in Ottawa County is in the fight for her life against a rare disease.

“She wasn’t reaching her milestones and developing right," said Lisa Weith, Addy's mom. "There was always something a little bit off. We just kept going to specialist after specialist.”

"The thing about mitochondrial disease is there’s no treatment and there’s no cure," said her mom. "There is no way to predict what is going to happen to her."

The disease depletes the 4-year-old's body of energy and she runs the risk of organ failure.

Addy also has a twin sister, Norah, who wasn't diagnosed with the medical condition.

“Definitely a fear of the unknown, Weith said. "I struggle with trying to control a disease I can’t control. 'Some of the things that may happen to her she might become blind, deaf, lose the ability to walk or talk, she might need a trach to help her breath.”

Addy wears a backpack with a feeding device that supplies her body with nutrients.

"Every sneeze, every cough, every sound that she makes it’s like 'uh oh,' Is she getting sick?" Weith said.

The little girls seems specialists at both the Cleveland Clinic and at Helen DeVos Children's Hospital.

“At least we’re able to treat it somewhat," said Eric Weith, the twins' dad. "But there’s still so many other unknown variables. I’ve never seen that kid ever get upset over things that others would get upset over.”

The girls' mom had to quit her job in order to take better care of her daughter. They're having a fundraiser to help cover expenses. The event is planned for August 5 at Terra Square from 4-7 p.m. on Chicago Drive in Hudsonville.