Throughout her time at Murphy Elementary School, third grade student Maylee Stump has been overcoming the odds and serving as a source of inspiration for her classmates and teachers.
On Oct. 17, Murphy Elementary held its 5th annual Purple Out Day fundraiser to honor Maylee, who has Rett Syndrome, a rare genetic neurological disorder that primarily affects girls and causes a progressive loss of motor skills and language skills. Many students and staff wore purple, the color associated with Rett Syndrome awareness, and raised funds for the International Rett Syndrome Foundation by purchasing specially designed T-shirts and hoodies prior to the event.
According to the International Rett Syndrome Foundation, the disease is caused by a mutation in the MECP2 gene located on the X chromosome in more than 96% of clinically diagnosed individuals. While Rett Syndrome most commonly occurs in females — approximately one in 10,000 births worldwide — males can have the disease too. Symptoms include near constant repetitive hand movements, seizures, breathing issues, scoliosis and digestive issues.
Students and staff at Murphy Elementary gathered for a group photo with Maylee and her family in the school playground. Photos by Ben Gagnon
Mallorie Stump, Maylee’s mom, said her daughter didn’t begin exhibiting signs of Rett Syndrome until she was age 1. From that point on, Maylee started to lose motor skills and the ability to speak. She was diagnosed with the disease just after she turned two years old and began having seizures about three years ago.
“Maylee had a few words, then we didn’t hear those anymore. Then her hand usage became really poor, and she couldn’t walk anymore,” said Mallorie. “She was falling behind.”
As Maylee reached school age, Mallorie and her husband Nathan decided to enroll their daughter at Murphy. Based on advice they received from other parents who had daughters with Rett Syndrome, they decided to place Maylee in general education classes.
In recent years, Maylee has made significant improvement and “popped back to life” thanks in large part to physical therapy and speech pathology services provided at Murphy Elementary. Maylee’s family also takes her to a Rett Syndrome clinic in Cincinnatti, where she receives physical therapy and aid with speech skills and nutrition.
Maylee Stump shares a tender moment with her teacher, Emily Kepsel.
Maylee communicates with Eyegaze Edge, a computer/ tablet that allows users to control the cursor and make selections using only their eye movements. The device, utilized by individuals with limited hand functions or paralysis, tracks eye movement and generates augmented speech by typing a message or selecting preprogrammed phrases.
In addition to speech generation, Maylee uses Eyegaze to complete school assignments and surf the web. The device can be mounted on her wheelchair.
Maylee has also received overwhelming support from staff and students at Murphy, making many friends and building a special bond with her teacher, Emily Kepsel, and paraprofessional Tara Reed.
Maylee’s mom, Mallorie, steadies Maylee while she poses with her sisters Maren and Mollie (bottom, left to right) and cousins Harlow and Laken Smiarowski (left) on Purple Out Day at Murphy Elementary.
“It means a lot to have Maylee here. She’s the sweetest girl and really has taught everybody in this building about acceptance,” said Murphy Elementary Principal Stacey Webber. “I think it’s taught our kids a lot to have her in the building.”
Mallorie said people quickly learn to look past Maylee’s disability once they get to know her.
“When you see her for the first time, you might automatically think that she can’t communicate. I always explain to people that she is an able mind in a broken body,” she said. “When you ask her a question and she answers, people are amazed. She’s very smart and funny and loves to laugh.”
As the oldest of four siblings, Maylee takes her big sister role seriously and loves looking after her three younger sisters, Mollie, Maren and Myles. Mollie is in first grade at Murphy Elementary; Maren, 4, attends St. Paul Lutheran School; and baby Myles was recently born.
Outside of school, Maylee enjoys the great outdoors and keeps busy with horseback riding on her family’s farm in Hadley and therapy riding at Banbury Cross Therapeutic Equestrian Center in Metamora Township. Her other hobbies include bike riding, listening to country music, blogging about her life and interests on about.me and riding around in a purple personalized golf cart she received from the Make-A-Wish Foundation.
Sarah Clemens, dean of students at Murphy Elementary, said Maylee also visits each classroom at the school once a year to interact with fellow students and spread awareness about her disease.
“Anytime they see Maylee in the hallway, they’re excited and want to talk to her,” said Clemens.
While Maylee still faces many challenges, Mallorie said she is sustained by her faith and helping her daughter attain more skills and reach her academic and life goals.
“If you really spend time with a child with special needs, you’ll see that they are a true messenger of hope,” she said. “They’re so inspiring in the middle of the things they go through and deal with. It’s an honor to be Maylee’s mom.”
To learn more about Rett Syndrome and how to contribute to the International Rett Syndrome Foundation to help fund research and treatments for the disease, visit rettsyndrome.org.