Boy, 6, battles Batten disease

GRAND RAPIDS, Mich. – Six-year-old Jacob Geer takes 12 pills every day to control his seizures, is fed by a tube and regularly visits a variety of doctors. He will be lucky to celebrate his 12th birthday.

One year ago, Jacob was diagnosed with Batten disease, a genetic disorder of the nervous system. He is one of 20 people in Michigan with the disease. Five of those cases are in the Grand Rapids area.

“I was newly pregnant with our youngest, and (my husband) Rob had lost his job of 17 years, so it hit us all at the same time,” said Chris Geer, Jacob’s mother.

His parents say they are racing against the clock, trying to raise awareness about the rare, incurable disease that slowly has robbed Jacob of everything, and eventually will claim his life.

“By making more people aware of (Batten disease), hopefully, we increase funding for it, and that creates the research as well,” Rob Geer said.

Jacob’s health has declined already. Soon, he will lose his eyesight, his ability to hold toys and walk. Eventually, he will become bed ridden.

“We have a slide outside that last year he could (go) up and down,” Chris Geer said. “He can’t do that anymore.”

But Jacob’s family of six refuses to give up hope. The Geers, of Caledonia, have other children, ranging in age from 9 months to 10 years old. They say they make the most of every day with their son, and it is their mission to share his story. Part of the problem is that not enough people know about Batten disease.

The annual Batten disease awareness days are this weekend.

“With the decline we’ve seen over the last year, we know this is going to be his last decent summer,” Chris Geer said.

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