Local six-year-old diagnosed with rare disease, community unites

CORDOVA, Md. – People across the world came together on Sunday to raise awareness for Batten disease a rare and deadly genetic disorder.

A local mom Holly Beish is fighting to save her son’s life.

6-year-old Conner has been diagnosed with Batten disease, a deadly genetic disorder with no cure. It is something Holly never expected to happen.

“I mean I remember just collapsing to the ground,” said Holly.

“The weight on me just brought me down from that diagnosis,” said Holly.

“Everybody thought he was basically diagnosed with just epilepsy,” said Jeff Beish.

“He started having seizures when he was about three and a half and things were progressively getting worse,” said Jeff.

Jeff said it is a challenge to watch his son slowly lose the ability to do almost anything.

“He’s lost the ability to walk, talk, and he can still eat on his own, but we have to feed him,” said Jeff.

“It’s rough to watch him just fade, but it’s part of the disease,” said Jeff.

That is why the family has created the Fighting for Conner Organization, which helps raise money for more research on batten disease. They hope this will help them to find treatments down the line.

“We were told there was no cure, which definitely was hard to take and there was a treatment, but it wasn’t FDA approved yet,” said Holly.

“It was in clinical trial, and so that hit us hard too because it wasn’t something that we could access right away,” said Holly.

Despite the challenges, 10-year-old Jaxon tells us he will not give up the fight for his little brother.

“I like playing with him because it makes me feel happy when he’s happy,” said Jaxon, “I love him to the end of the world.”

“Hope is the main thing, and just that hope for a cure, hope for some way to make him better,” said Holly, “That’s what pushes me and keeps me going is hope and him.”

Categories: Maryland