By Dominic Garcia

(CBS4)– Madeline Meier’s genetic disorder is so rare it doesn’t even have a name.

“To this date no one else has been described with this mutation. So we don’t have a road map for what Maddie’s life looks like,” said her mother, Melissa Meier.

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She says Maddie, who is 3 years old, started having seizures when she was 6 months old. Doctors discovered she had a point mutation in chromosome 1, very important for nerve and muscle development. Maddie can’t talk, has developmental delays, seizures, and can’t sit by herself. Melissa says she’s been desperate to give her daughter some sense of normalcy.

“I think people see Maddie and see that all she wants to do is go out and explore,” she told CBS4’s Dominic Garcia.

Melissa, a physician, consulted with a team of experts to see what kind of wheelchair her daughter needed. They settled on a specialized one that can rotate in space but keep her in a seated position. The cost was around $7,000, but their insurance, United Healthcare denied it.

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“They denied it because they said it won’t grow with her. This wheelchair has 4 inches of growth in width, and 3 inches to grow in depth and they said that’s not enough. And just for fun we measured and my 11-year-old could sit in that wheelchair,” Meier told CBS4.

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Melissa said the chair is so specialized that if it’s too big, it won’t work for Maddie.

“You don’t go and buy pants that are three sizes too big because you don’t want your kids to outgrow your pants. No one does that,” Melissa told CBS4’s Dominic Garcia.

She says it wasn’t until after CBS4 contacted United Healthcare that her wheelchair was approved. After the interview with Melissa, United Healthcare sent a statement, “UnitedHealthcare provides coverage for wheelchairs and medical strollers based on members’ medical conditions and their health insurance benefits. We worked with the wheelchair company to provide coverage for a wheelchair that meets Maddie’s needs under her family’s plan.”

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Melissa is grateful her daughter’s wheelchair has been approved, but says it shouldn’t have to come to this.

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“We are fortunate enough to afford to buy her this wheelchair, but I had to tell this story because there are so many people who don’t have the ability. They’re at the mercy of these insurance companies who are denying this so they can save money. These kids just want to be able to go out into the world”.

Dominic Garcia