Morgan is living life with an ultra-rare disease. Her mother, Kelly Kozole, says doctors diagnosed Morgan with beta-propeller protein-associated neurodegeneration, or BPAN. The disease progressively damages the nervous system. It causes recurrent seizures, developmental delays, and impacts movement.

DETROIT (FOX 2) – Like most children, Morgan enjoys games, showing off her toys, and spending some time on her tablet.

But sadly, unlike most children, Morgan is living life with an ultra-rare disease. Her mother, Kelly Kozole, says doctors diagnosed Morgan with beta-propeller protein-associated neurodegeneration, or BPAN.

Why you should care:

The disease progressively damages the nervous system. It causes recurrent seizures, developmental delays, and impacts movement.

“There are about 400 million people worldwide that are impacted with rare diseases,” said Kozole. “My daughter right here, Morgan, is one of those kids. Once we figured out the diagnosis of BPAN, the second really traumatic news was that there was no cure and no treatment, and go home and love your child.”

What makes Friday so special is it’s Rare Disease Day, which annually falls on the last day of February.

Kozole, who is the vice president of revenue for the Detroit Lions, is on a mission to raise $10 million for a new gene therapy to treat Morgan.

What’s next:

Her connection with the Lions has helped get some big names on board to spread awareness of BPAN and other rare diseases.

“We had people like Eminem, and Kid Rock, Bob Seger, Calvin Johnson, Barry Sanders, Aidan Hutchinson, Alex Anzalone all retweeted, posted our messages about Morgan,” she said. “My message to people is never give up. It took us two years to find out what the diagnosis was. Once we found the diagnosis, it’s now even a longer journey to find a cure, but we really, we can see it behind us, we believe one day we will find a cure for Morgan.”

What you can do:

If you want to learn more or help support, you can tap here and here.