Shakopee Family Seeks Cure For Brothers' Rare, Deadly Disease

SHAKOPEE, Minn. (WCCO) -- It's one thing for brothers to share similar traits and looks. But for one family, a pair of boys unfortunately share the same deadly fate.

It's called Batten Disease. The brothers have a variant of it known as CLN6. It's so rare, their parents learned only 10 other children have it.

Raising two bouncy boys can have its challenges. Parents Beth and Bryan Fugere were prepared for that part, but not what happened months earlier.

"It was in September when we were like, 'There's something wrong,'" said Bryan. He was talking about his 5-year-old son Blake. The boy's eye sight suddenly got worse. It became so bad, he said his son is now legally blind. Blake's motor and speaking skills also started regressing.

"He wasn't remembering his name," Beth said. She compared it almost to dementia, saying Blake would constantly ask questions when months earlier he already knew the answer.

The Fugeres said they visited countless doctors but kept getting a misdiagnosis until they went to the Mayo Clinic in Rochester. They finally got their answer, however it wasn't one they wanted to hear.

"And they say he's got Batten CLN6, he's the 11th in the world that has this specific variant and he's going to die," Beth said.

According to the Batten Disease Support and Research Association, the disease is inherited from a child's parents. It can lead to seizures, blindness, personality and behavior changes, as well as losing the ability to talk and walk.

By having the CLN6 variant, Blake's life expectancy shrunk to about six more years.

His parents knew the next step was getting younger brother Brett tested. They said they learned there would be a 25 percent chance Brett would have it. His test came up positive for Batten CLN6.

"You read and you hear his diagnosis and you just can't imagine, this is exactly the same variant," said Bryan.

Brett isn't currently showing any symptoms of the disease, but the Fugeres expect that to change in a few years.

"No parent should have to go through this at all, much less have to go through this multiple times," said Beth.

Lucky for them, there might be hope.

The Fugeres spent countless hours researching the disease and came across the Charlotte & Gwenyth Gray Foundation. It was started after a family found themselves in a similar situation, two daughters who both had Batten CLN6.

Through the foundation, the Fugeres learned of a new gene therapy treatment the FDA recently approved.

Earlier this month, Blake was evaluated for the treatment at an Ohio hospital. The test result showed he was eligible for the gene therapy.

"We don't know if it's going be a few weeks, many weeks (until Blake potentially gets treatment)," said Bryan. "But you know there is hope."

The Fugeres say their focus right now is trying to "rebuild" Blake's mind and body, then stop the symptoms of the disease from ever happening to Brett.

Online donations have poured in to help the family with potential medical and travel expenses.

"We have so many people following our story and so many people wanting to know, 'How can we change this?'" said Beth.

But for the Fugeres, it's even more important for them to steer people towards the Charlotte & Gwenyth Gray Foundation. They created a page in which people can donate directly to the foundation in Blake and Brett's names.

"There is a little glimmer of hope that we can actually, not only help our children but potentially change medicine," said Beth. "We must continue this research, we must continue the awareness around Batten as a whole. We don't eat sleep or breathe anything but finding a cure. We're not going to stop."

For more information on Batten diseases as well as the Charlotte & Gwenyth Gray Foundation, click here.

To make a donation to the foundation in Blake and Brett's names, click here.

To make a donation to help the Fugere family, click here.

The Fugeres added that any donated money they do not use for their family will go directly to the foundation.