Kentucky woman battling extremely rare combination of health conditions

LINCOLN COUNTY, Ky. (WKYT) - A community is planning several fundraisers to help a young woman battling two very rare health conditions.

Now 21 years old, Brayli Steberl was sick for four years before her family knew what was wrong.

She eventually learned she had a blood disorder called paroxysmal nocturnal hemoglobinuria, or PNH, and that part of her own blood was attacking her. What’s more, while in the hospital, she learned she has another condition called Budd Chiari syndrome, a liver condition.

Both conditions are extremely rare, and it’s even more rare to have both together. They are also extremely expensive to fight.

Treatments cost hundreds of thousands of dollars, and insurance co-pays cost $80,000. So many uphill battles but her mother, Kathy Long, says Brayli’s faith is so strong.

“Her desire is to just truly serve the Lord. She said this isn’t going to stop me. It is going to be part of the journey,” said Long.

Brayli is now a student at Campbellsville University and even goes on mission trips.

There is a GoFundMe to help Brayli with medical costs. A car wash will also take place from noon to 3 Saturday at the Lincoln County Sheriff’s Office. Everything will go to help her in this fight for her health.

Brayli has been seen by doctors in Kentucky, Ohio and Tennessee and will likely face more travel to battle her conditions.

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