Minn. Newborn Fighting Rare Disease Affecting Bones, Breathing

Updated: 07/11/2014 2:31 PM
Created: 07/10/2014 10:14 PM
By: Joe Mazan

Less than one in 100,000 children receives the diagnosis one newborn Minnesotan received. Now, just months into his life, a Carver County family is dealing with possibility of his death.

Shortly after their son Lucas was born in May, Barbara Anderson and Brett Lane of Mayer learned their child had a rare disorder called rhizomelic chondrodysplasia punctate, or RCDP.

The condition shortens bones and creates severe breathing problems. Doctors told the couple there are only 59 cases known in the world.

 “[It was] heartbreaking,” Anderson said about learning of Lucas’s condition. “I could barely pick myself up off the ground.”

Sixty percent of children diagnosed with RCDP survive the first year, and only 30 percent live past the age of 5.

“There’s been a few times I’ve thought about it, and you cry yourself to sleep,” Lane said.

“Every minute I get is a minute I will cherish … He might not be here very long,” Anderson said. “I can never get one moment back.”

The family has held fundraisers and started a page to help cover the mounting medical bills. Anderson said Lucas is an over half-a-million-dollar baby already.

Learn how you can donate and help the family with medical bills here.

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