Benefit Will Raise Awareness for Rare Disease Affecting Two Shakopee Brothers

March 10, 2017 10:51 PM

It's a disease that only affects about a dozen people in the world.

That's according to the Charlotte and Gwenyth Gray Foundation. Sadly, two brothers in Shakopee have been diagnosed.

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Now, two parents are on a mission to raise awareness for this growing foundation and find a cure for their two boys, who have a specific gene defect of Batten Disease, CLN6. 

Over time, Bryan Fugere and his wife realized something wasn't right with their son Blake.

"Kind of over time he just seemed to really not progress," said Bryan Fugere.

As his son's condition declined, the family learned Blake had the genetic defect.

"The definition of what it was was catastrophic," Bryan Fugere said. 

That definition is a progressive deterioration of vision, motor functions, slowed learning, and a life expectancy of up to 12 years. 

"It's sad to watch the progression of the disease trap him," said Beth Fugere, the boy's mother. 

But the bad news didn't stop. Blake's now 11-month-old brother, Brett, was diagnosed with the same disease.

"It's odd -- how unlucky can you be?" Bryan Fugere said. 

The family is now reconstructing its focus in life to find a cure.

"There is no other option other than to keep pushing," Bryan Fugere said. 

The Gray Foundation recently funded an FDA-approved clinical trial for children with this particular disease. Blake just returned from this treatment, and his parents say so far, so good.

"Every day when I wake up, I'm excited to see a new Blake," Bryan Fugere said. 

"I've heard him count to 10. Those things were not occurring just a month ago, and so it's such a joy to watch that unfold," Beth Fugere said. 

While these two brothers share one type of Batten Disease, other gene defects impact many across the world.

"We're on a mission," Beth Fugere said. 

The true long-term impact of the gene therapy Blake underwent is unclear, but the Fugere family said this glimmer of hope could be the start of something great.

"It's a painful experience, and no parent should have to do it once, much less twice, but we're going to help those families get the necessary help they need," Beth Fugere said. 

Brett is in New Jersey right now with grandparents and awaiting the similar treatment that Blake received.

There is a Saturday benefit at the Prairie Tap House in Eden Prairie at 8 p.m. to raise money and awareness for Batten Disease.

Learn more about Blake and Brett here, and more about the disease here.


Brett Hoffland

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