By Zicpraiz 
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Morgan, the daughter of Detroit Lions Vice President Kelly Kozole, is living with an ultra-rare disease called beta-propeller protein-associated neurodegeneration (BPAN). The disease progressively damages the nervous system, causing recurrent seizures, developmental delays, and impacting movement.
Kozole says there are about 400 million people worldwide affected by rare diseases, and her daughter is one of them. After receiving the diagnosis, Kozole was told there was no cure or treatment, and to simply “go home and love your child.”
To raise awareness and funds for a new gene therapy to treat BPAN, Kozole is on a mission to raise $10 million. Her connection with the Lions has helped get big names like Eminem, Kid Rock, and Calvin Johnson to spread awareness of BPAN and other rare diseases.
Kozole’s message is one of hope and perseverance. “Never give up,” she says. “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.”
Rare Disease Day is observed annually on the last day of February to raise awareness for rare diseases like BPAN.