Lafayette student with spinal muscular atrophy wants to be treated like any other student
In 2007, Danielle Pruitt and her preschool classmates at Rosa Parks Elementary used web cams so that she could see them and they could see her while she lay on a table in her living room contending with the most aggressive form of the disease called spinal muscular atrophy.
At that time, the 3 year old — whose congenital condition made it hard for her to talk, swallow, breathe and make all but the slightest movements —was learning to read and with her mother’s help, could play dress up with her classmates.
Fast forward to 11 winters later.
Fourteen-year-old Danielle is lying on a table in her living room, her mother Beth Pruitt and an iPad at her side, and a paraeducator Facetiming her courses from classrooms at Lexington’s Lafayette High School. Danielle is mastering the school’s pre-engineering program. She maintained a 4.0 grade point average throughout middle school.
When Danielle has a question for the teacher, her mother raises Danielle’s hand, and repeats Danielle’s words so the teacher can understand. Danielle dictates her essays and the answers to questions on her assignments to her mother, who writes down every word.
In addition to repeating her words, her mother “moves me and carries me,” Danielle said.
The freshman received Kentucky’s 2018 “Yes I Can” Award in academics and was one of two national winners in the academic division. Presented by the Council for Exceptional Children, the state and national honor recognizes students with special needs. Danielle will be introduced during the Council’s Indianapolis conference in February 2019.
“In school, I do everything as much like everybody else as I can but there are some complications,” Danielle said in the essay that accompanied the award nomination that her teacher submitted. Spinal muscular atrophy “limits my ability to move, which limits my ability to do things like everybody else. However, my brain is perfectly normal ... because of this I like to be treated like everybody else in school.”
She added, “I like to say I’m good from the neck up. I can do regular deadlines, regular tests, regular activities. “
Danielle, who takes Spanish III as a freshman, is admittedly frustrated that “some people don’t realize how darn smart I am.”
“I just want to operate like a regular student in the classroom. I’m working hard at school to get into a decent college. I’ll work hard in college to get a decent career,” she said.
Danielle was diagnosed with SMA as its commonly called, a complex medical condition, at 7 months. Her mother and father, Frank Pruitt, set out to find the best way to care for her. By the time she was ready for school, they had found a technology solution to help her attend class.
Most years since she was in middle school, she has attended class on campus during the fall and spring. Her mother accompanies her and she uses a wheelchair and supplies like a clipboard so she can better see her work. She also has an aide, a paraeducator, who helps her record her answers on tests and assignments.
“It’s hard for me to socialize in the classroom,” she said in the essay. “I can’t turn my head to look at different people, so I can only face one direction. I overcome this by trying to socialize more between classes or during lunch.”
During the winter and flu season, Danielle has to stay home to avoid germs. “I used to dread the Facetime season all year,” she said, because she misses attending class with her peers. “ I still hate it,” she said of having to stay at home instead of on campus. When I turn 18, I’m going to” go to school all year.
“The quality and connection has really changed a lot,” over the years, Beth Pruitt said of the technology they use which has much improved over time.
In her first semester in high school, Danielle has participated in a student council meeting and even performed in a theater production in the school auditorium using an iPad and Facetime.
“We’ve been very fortunate,” said Beth Pruitt. “We’ve been surrounded by people who are very willing to problem solve, figure out how to make stuff work as opposed to saying, ‘That’s never been done before.’”