Floyd man living with unusual syndrome
What if opening the refrigerator was life threatening? For those diagnosed with Prader Willi syndrome, it can be.Prader Willi syndrome is a lifelong genetic condition of slow metabolic rates, learning disabilities, speech impairment, diminished muscle tone and failure to grow. Caused by the deletion of chromosome 15 from the father’s genes, the illness often impairs the brain’s ability to tell people they are full. Some PWS sufferers lack the ability to feel satisfied after a meal and overeat, in some cases until death. Children with severe PWS have been known to eat from trashcans.
Floyd County’s Barbara and Lamar Paul, grandparents of Michael Paul, have firsthand experience with the syndrome. Michael, who they have raised since infancy, has the illness. “Once diagnosed, parents need to be able to get more help,” said Barbara Paul.
Paul family members have witnessed the tragedy of the syndrome, with the death of Michael’s first PWS friend, Clyde Mays, at age 25. At an Atlanta Braves game, the fairly thin Mays, on a regimented diet, was given money to purchase a snack. With birthday money in his pocket, which group caretakers were unaware of, he purchased and ate everything he could at the concession stand. Mays began vomiting and was taken to the hospital. Because those with PWS lack the ability to process food normally, he became severely ill and died soon afterward.
Debbie Lange, Executive Director for the Georgia chapter of PWS, reported five deaths in the state, all under the age of 24, during the past four years. Michael has had several health issues associated with PWS. In 2001, he contracted pneumonia, which was further complicated by mild asthma. He uses oxygen at night and his immune system is susceptible to respiratory infections. He has been hospitalized many times for pneumonia and it continues to be a problematic condition.
Although Michael has disabilities associated with his diagnosis he also, has many abilities. He fishes frequently and has filled the creek behind his house with those he has caught. “He’ll fish in the rain,” said his grandfather. “He’ll fish two or three times a week.” Trophies from several Challenger sports line the top of his TV stand, as twisted Nintendo cords dangle below an assortment of video games and picture frames — other things he enjoys. Of his many accomplishments, Michael holds up a photo, where he is teaching at an elementary school. He is fully clothed in a Floyd County Sheriff’s uniform.
“Tim Burkhalter swore him in as an honorary sheriff,” said his grandmother. “No, not honorary,” interrupts Michael, “… just sheriff.”
In 2005, Michael graduated from Rome High School with a special education diploma. “It was about time,” he said. Art was his favorite class. He uses bold colors and likes exaggerating proportion and scale, as his cartoon and seasonal holiday subjects are twice as big as one would expect. In December, at Mount Berry Square mall, Michael randomly came across Just As I Am, a young adult choir for those with developmental disabilities. While preparing to perform a Christmas concert, Pat Sweezey, choir director, who knew Michael as a student, encouraged him — with a free T-shirt — to join. “He was happy to get the free T-shirt and soon realized he liked singing with us,” she recalls. “There isn’t any song he doesn’t like.” After only six months as a choir member, Michael has performed solos; singing country hit single “Long Black Train” by Josh Tuner.
With choir involvement and a sense of confidence, he still struggles with food. As the group performs at local churches, they are greeted with covered-dish casseroles and homemade favorites for lunch. This setting can be stressful and potentially life-threatening for Michael, as he sits side-by-side with friends, enjoying hearty portions, while comforting smells circulate across the room, a tempting environment for even those who can control food portions.
As a member of Shorter Avenue Baptist Church, Michael attends Sunday school and helps on Wednesday night with the children’s Awana program. “It gives him a strong sense of doing something worthwhile,” said his grandmother. “He fixes the bulletin board, sorts paper and assists with anything he can.” In addition to these activities and hobbies, Michael is employed by Network. This is a four-day, paid adult program that utilizes each individual’s hands-on skills to help business in the community.