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Local News

Southwest Wisconsin Baby, Family Endures Rare Disease

Bryce Heckendorf

A number of events have been created to support a southwest Wisconsin family during a difficult time as their child endures a rare degenerative disorder.

Bryce Thomas Heckendorf was born in May 2013. For the first five and half months of his life, he was a healthy, thriving baby boy: He hit key milestones and was developing right on track.

In October, his parents Jenna and Kyle noticed that he didn’t seem to be using his arms as much as he had been. After a number of doctor’s visits, Bryce was diagnosed with Krabbe Disease.

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That’s Jamie Martin, Bryce’s aunt, who helped start the BStrong Fund. She, Bryce’s mom, Jenna, and their brothers grew up on a farm in Glen Haven and attended school at River Ridge.

One of the upcoming fundraiser events will be an Ice Fisheree organized by Mike Mezera this Saturday at River of Lakes in Bagley. Registration will be at the Bloomington Stop n Go and the Luck of the Irish in Bagley.

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Martin says that she hopes that they can continue to raise awareness for this rare, but fatal, disease – and promote the importance of universal newborn screenings…which, she says, can prevent the onset of the disease.

 

 

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Listen to the full People, Places, & Things  interview with Jamie Martin below.

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Website: http://thebstrongfund.org/