Sad news: VP of the Detroit Lions made a shocking announcement about her daughter’s unusual illness.
Morgan enjoys playing games, playing with her toys, and using her tablet like most kids do, but she suffers from an extremely rare illness. According to her mother, Kelly Kozole, doctors have diagnosed Morgan with beta-propeller protein-associated neurodegeneration, or BPAN.
The illness gradually weakens the nerve system. It affects mobility, results in developmental delays, and produces frequent seizures.
“There are about 400 million people worldwide that are impacted with rare diseases,” stated Kozole. Morgan, my daughter, is one of those children. The second extremely upsetting piece of information when we received the BPAN diagnosis was that there was no cure or therapy. “Go home and love your child.”
Friday is particularly noteworthy since it’s Rare Disease Day, which is observed on the final day of February every year.
In order to treat Morgan, Kozole, the Detroit Lions’ vice president of revenue, is trying to raise $10 million for a novel gene treatment.
Future plans: Her association with the Lions has facilitated the inclusion of well-known figures in an effort to raise awareness of BPAN and other uncommon illnesses.
“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 got the diagnosis, it’s now even a longer path to find a solution, but we genuinely, we can see it behind us, we think one day we will find a cure for Morgan.”
