"They only gave her a couple months to live so it could have possibly been her last birthday we get to celebrate with her," said Bethany Everts, Madison’s mother.
Madison, who likes to go by Maddie, somehow manages to smile through her pain. The 9-year-old, weighing only 35 pounds, has been suffering from a type of Leukodystrophy since she was 3 months old.
The disease leads to abnormal development or destruction of the white matter in the brain. It affects her spinal cord and peripheral nerves. Doctors thought she'd live to be somewhere between 15 and 20 years old.
"I have to slowly watch my daughter get taken from me and it's heartbreaking," Bethany Everts said.
In early June, doctors finally figured out what form of the rare disease Maddie had. They also realized her life would be ending sooner than anyone thought. She has just a few months left to live.
"Love your kids," Stephanie Everts, Maddie’s grandmother, said. "Hold on to them tight because you never know when something is going to happen."
Maddie's 3-year-old sister Bailey can't grasp the concept of a terminal illness.
"She knows she sick, but she doesn’t understand what's going on and what's happening," Bethany Everts said.
However, the Everts' community understands the heartache. Friends and neighbors have organized a benefit to help the family once Maddie is no longer alive. They plan to create more memories for the 9-year-old, and maybe even top her fantastic birthday party.