How to help Pine City, Minn. infant with rare genetic mutation

- A boy in Pine City, MN was diagnosed with a deadly disease with no treatment and no cure, now the family is praying for a miracle.

“He's a goofball. He is happy all the time” Brittani Larson said about her 11-month old son Ryker Bean.

Ryker’s appearance was happy when Fox 9 visited him, but his jovial exterior hid a deadly disease.

“I was just torn. I cried and cried. And I’m still in shock, hasn’t totally hit me 100%.”

The devastating diagnosis about a month ago after Ryker's mother found him having a seizure in his crib.

“His eyes were stuck on the right side of his head. Went over, ran my hand through hair, said what are you doing, no response.”

After 5 days and dozens of tests in the hospital doctors discovered Ryker has Alexander Disease a rare genetic mutation that destroys the insulation around nerve fibers in the brain which causes stiffness in the arms and legs, difficulty swallowing, and developmental delays.

There have only been 500 cases since it was discovered in 1949.

However, it’s also fatal, with most people who have it not living past their sixth birthday.

“He's gaining skills which is good, but he could start losing it at anytime. He could go downhill slow or go downhill fast, they can't tell us much more.”

The glimmer of hope, doctors say, is a bone marrow transplant that could possibly prolong Ryker's life, even if it won't cure him completely.

In the meantime, his friends and family are rooting for Ryker to beat the odds.

"If he hadn't had the seizure. We wouldn't know to this day."

Facebook: Rooting for Ryker


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