What started as one mom’s worst nightmare evolved into a story of desperation, hope and a miraculous recovery.
When Alex Dixon was 10, the gifted student who loved music and art came down with pneumonia. The pneumonia caused a malfunction in her central nervous system that resulted in a pain disorder and spasms that caused numerous dislocations and left her a student with special needs using a wheelchair by age 12.
Alex, along with dad, Marc, and mom, Juli, a professor in the University of Central Florida’s College of Education and Human Performance, took off for hospitals up and down the east coast of the United States seeking a cure for Alex’s pain.
“We sought out the best experts we could find and their message was the same. It seemed that all we ever heard was, ‘I’ve never seen anything like this,’” said Juli, a mathematics education professor.
Alex’s situation became desperate, and the family was forced to induce her into a coma to buy time to save her life. When Alex’s condition worsened, the family’s only option seemed to be emergency brain surgery, but during the procedure to implant a deep brain simulator, 12-year-old Alex suffered a massive stroke.
“I can vividly remember that day,” said Marc. “It was, by far, the worst day of my life. I thought Alex would die.”
The stroke left Alex severely physically and mentally disabled, however, her spasms stopped and her body released its painful twisting. Physical therapy helped Alex walk again and rebuild her strength, and hours upon hours of tutoring and practice helped her regain her communication skills and academics.
“Helping Alex to recover took everything I knew as an educator and more,” said Juli. “Interestingly, it has also transformed my practice as a teacher educator. I am a better professor because of my effort in reteaching Alex.”
Still, Alex isn’t 100 percent recovered—she suffers from aphasia, has a limited visual field and struggles with the use of her right hand.
At high school, where she’s now in 10th grade, Alex works with a one-on-one aide, but she’s back in regular classes and once again earning high marks and passing state exams. It takes her three hours to do the same amount of homework it might take an average student one hour to complete, but she’s thankful to be where she is today.
“I work almost nonstop, but I am happy,” said Alex. “I feel good inside because I keep getting better.”
At the start of Alex’s illness, Juli began capturing photos and videos and writing a journal to keep relatives and physicians up-to-date and to document Alex’s recovery. As Alex’s outcome became more hopeful, Juli started to write more formally about the experience, and her other daughter, Jessica, joined her. As Alex’s little sister, Jessica also was on board the emotional roller coaster of Alex’s illness and recovery.
The result is “A Stroke of Luck: A Girl’s Second Chance at Life,” co-authored by Juli and Jessica. The book was released on Amazon.com last year.
“I am accustomed to writing as part of my work as a professor, but writing this book was quite different because it is very personal,” said Juli. “I share my greatest hopes and fears, and every time I question my choice to move forward with publishing something so private, I am reminded of how this book might give others who struggle hope.”
For Jessica, her five chapters of the book deal with being the sibling of an ill child. She wrote the book as her own form of release, but also so that Alex and others could learn from her experiences.
“Writing the book was difficult because it brought back memories that were hard to deal with, but I felt that it helped to heal some of the wounds I didn’t even know I had,” said Jessica.
As for Alex, she’s working with physicians, teachers, guidance counselors and school districts in Central Florida and beyond to help them improve their outreach to students with special needs.
She’s in a unique position in that she can articulate the different needs of students with and without disabilities, and she’s working with educators to ensure a positive, rigorous learning environment for students with special needs.
“I want to change the perspectives of teachers, doctors and others about supporting students with special needs,” Alex said.