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Englewood man battles rare, incurable and crippling disease

Family working to make ends meet with treatments
Posted at 5:42 PM, Nov 23, 2018
and last updated 2018-11-23 21:47:09-05

ENGLEWOOD, Colo. -- At this time of year, many of us reflect on what we are most thankful for. For one Englewood family, each day is a gift as their 22-year-old is battling a rare and incurable disease.

"I feel every rotting bit of me everyday,” said Brandt Kuhr. “It’s a lot, my whole body is pretty messed up.”

Brandt’s pain first began in high school.

"I was diagnosed with CCM, which is Cerebral cavernous malformations. They call it raspberries disease or Swiss cheese brain. It shows up as all of these black dots that look like holes,” said Brandt.

The brain disease was followed by ten different strokes at the age of 18, causing Brandt to face depression and suicide attempts.

“I was completely at peace with death at that point because I am like, 'you know this is the end,'” said Brandt.

A doctor at Mayo Clinic in Rochester, MN, picked up Brandt's case and performed surgery on his brain.

“I have been fighting like crud ever since."

But that fight was only the beginning to what lied ahead.

“I went from teaching a workout class and being strong to walking around with a cane and being in pain all the time."

Brandt recently received a diagnosis of Chronic inflammatory demyelinating polyneuropathy (CIDP), which is a degenerative immuno-disorder that eats his nerves and kills his muscles. Brandt is fighting through his final year of college at the University of Northern Colorado, but is frequently returning to his home in Englewood for expensive medical tests and treatments.

“I have lost feeling in legs, in my feet, some areas of my arms."

With mounting surgery and hospital costs, the treatments ahead will be tough for his family to afford.

“It’s a real juggling act to be a single parent,” said Pamela Kuhr, Brandt’s mother. “I am trying to hold down a job and then get another job so that I can make ends meet. I just want to always be there for him and be a good mom."

Music helps soothe Brandt's pain, but it's his faith that keeps him playing through each day.

“I am going to suffer well, I am going to keep close to God and I am not going to let this stop me,” said Brandt.

A GoFundMe page has been setup to help support medical costs for Brandt.