LABELLE — Recently a young teen wandered off from her family causing some serious anxiety and panic as they quickly went into search mode. The family called everyone they could to immediately mobilize and begin searching for the girl. She was nowhere to be found, and her family was worried sick about what could happen if she wasn’t spotted soon.
When the missing teen’s mother called the Hendry County Sheriff’s Office, she explained that they should look everywhere that might have access to food. The HCSO deputies seemed somewhat confused, even worried upon receiving this information. But her mother explained this was because the missing teen in question had been diagnosed with a complex genetic condition known as Prader-Willi syndrome (PWS).
According to the Prader-Willi Association, “PWS is caused by the loss of function of genes in a particular region of chromosome 15. These genetic changes occur as random events during the formation of reproductive cells (eggs and sperm) or in early embryonic development. Affected people typically have no history of the disorder in their family.”
Prader-Willi syndrome can be characterized by hypotonia (weak muscle tone), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to hyperphagia (chronic overeating). This urge to eat requires close monitoring, as it can be so extreme that it results in obesity or even death.
Luckily, the teen was spotted by a friend who was familiar with PWS, and the missing teen was found by HCSO deputies on the side of the road, in front of the LaBelle Walmart. This was quite a long hike from the Angel Center, where she had been earlier with her caretakers and siblings.
She told the deputies she needed to go for a walk. “She was walking to Riverdale, she told me. She wanted to go to Dairy Queen,” said her mother, Mary Pringle. “She was oblivious of the dangers she could have been in.” Her mother added, “I was so pleased that so many stopped what they were doing left homes and jobs and helped.”
Pringle is on the board of the Florida chapter of the Prader-Willi Association. She wanted to bring awareness to Hendry County about Prader-Willi syndrome.
She said, “Keeping them busy is key to offset anxiety. Many are sent into group homes at an early age do to their need for high supervision 24 hours a day.” She went on to say, “I also encourage families to contact APD to get those eligible on the waiver to help at home. This syndrome is very taxing on families.”
APE is the Agency for Persons with Disabilities, an agency separate from the Department of Children and Families specifically tasked with serving the needs of Floridians with developmental disabilities. APD works in partnership with local communities and private providers to assist people who have developmental disabilities and their families. APD also provides assistance in identifying the needs of people with developmental disabilities for supports and services. To find out more visit them online: apd.myflorida.com/about/
To find out more about PWS, you can contact the Prader-Willi Association by phone at 800)-926-4797 or visit them online: www.pwsausa.org/what-is-prader-willi-syndrome/.