Polly Pozzo, an upcoming artist at the tender age of nine, faces serious daily challenges. Polly has a rare genetic disorder called muscle-eye-brain disease, or MEB, which is a form of Muscular Dystrophy.
Most of us walk, talk, and take care of ourselves independently. For Polly, everyday tasks like these aren’t easy. Polly relies on the help of her father, Bill Pozzo, a local Valparaiso artist, for assistance.
Polly’s handicap is so severe, she is nonverbal, and can’t fully grasp objects with her hands. She also has limited sight and cognitive impairments.
“We knew we’d face challenges when my wife was pregnant,” Bill said.
Early testing indicated that Polly would have serious health complications. Sadly, these were challenges Bill and Polly would navigate themselves. Polly’s mother, Bridget Pozzo, passed away from cancer when Polly was only three years old.
Polly was diagnosed with MEB when she was only a few months old.
“It’s so rare, there only about 80 documented cases of the disorder,” Bill said.
Because of MEB’s rarity, Bill doesn’t have a large community of families to discuss the diagnosis with. Nevertheless, Bill has a solid network of support. Polly is lucky enough to have a lot of help that includes her aunts, grandparents, and longtime caregiver, Carissa Underwood.
“Carissa is like a second mom to Polly,” Bill said.
Carissa, who has been Polly’s caregiver for 6 ½ years, has a son who befriended Polly.
“The two of them are like siblings,” Bill said.
Carissa is essential in Polly’s day to day routine, which includes going to school at SELF in Valparaiso. Polly is currently in the third grade.
With long chocolate brown hair, hazel eyes, and quirky black framed glasses, Polly is a growing nine year old with many interests.
“She loves swimming in the neighbor’s pool and golfing,” Bill said. “We actually love the skate park because I can roll her along.”
Among Polly’s interests, her biggest passion is art.
“A local coffee shop put her work up for sale, and we were so excited that she sold six of her pieces,” Bill said.
Bill and Polly have plans for future exhibits with their eyes set on the Center of Performing Arts in Munster.
“Polly loves painting,” Bill said. “It’s something we’ve done together since she was really little.”
Polly is not only an artist, but an inspiration for the community. Bill acknowledges one of Polly’s most remarkable qualities is people’s response to her presence.
“Polly draws the best out of people," Bill said. “Everyone is so nice and helpful. When I’m alone in public, no one pays me any attention. Whenever I am with Polly, there is so much kindness and help by ordinary strangers. It’s amazing.”
While a raising a growing girl as a single father has its challenges, Bill does whatever it takes for his daughter. “I let her hair grow out long so that I can style it,” Bill said.
Bill is even learning how to braid.