AUBURN, Mass. – October is Breast Cancer Awareness Month, getting great publicity with pink on athletes’ jerseys and walks to raise funds for research. But an Auburn family wants residents to know that October is also for another important cause.
October is also Rett Syndrome Awareness Month, and the disorder affects eight-year-old Maggie McGuigan, a student at Bryn Mawr Elementary School, who was diagnosed with the condition in 2007. Jessica McGuigan, her mother, wants people to be aware of this syndrome, which she says “doesn’t get a lot of attention because it is so unheard of.”
“Rett syndrome stops her from having anything close to a normal life,” Jessica said. “She cannot speak or feed herself, she has difficulties with walking and she suffers from seizures and many other complications that come along with Rett Syndrome.
“Every day is a battle,” she added.
According to the National Institute of Neurological Disorders and Stroke, Rett syndrome is “a neurodevelopmental disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability… Rett syndrome is estimated to affect one in every 10,000 to 15,000 live female births.”
“It’s kind of like having a child who suffers from multiple disabilities,” Jessica said. “But on the other hand, Maggie is a beautiful 8-year-old girl so full of life with such a great joy of life. She always has a smile on her face.”
Jessica said that Bryn Mawr has been “phenomenal,” providing Maggie with one-on-one aid and installing a new wheelchair ramp. The school has also been accommodating with Maggie’s schedule, allowing her to come to school at 10:30 a.m.
While the Auburn family was unable to attend a Rett syndrome awareness event this month, Jessica hopes to plan an awareness event in town for the future.
“Whether it be a stroll-a-thon or a walk or run, we would love to plan something,” Jessica said. “That’d be a great way for people to become aware and to raise money for a cure.”
The International Rett Syndrome Foundation is trying to find a cure for the debilitating condition. For more information or to donate to the foundation, visit its website.