BAYADA client Jack Freedman was diagnosed with spinal muscular atrophy (SMA) at six months of age, he was not “supposed” to survive past two years old. So, therefore, he wasn’t “supposed” to go to school, learn to read, do math, enjoy trips to the museum, play video games, watch movies, or have fun. But he has – and still does.
SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants, affecting approximately one in 10,000 babies. When Jack was diagnosed, his parents were told their time with Jack would be very limited.
Now, almost 20 years later, Jack continues to defy the odds, to the delight and amazement of his doctors, family, teachers, and friends. But for Jack, most days he just feels like a ‘normal’ person – just the way he likes it.
“My typical day is pretty normal,” explains Jack. “I go to school, take naps, do my homework, and check my email and Facebook. I usually play a computer game or watch a movie before bed.”
Jack does many of the same things other people do, just in different ways. He does his schoolwork with the help of computer-assisted, eye-gaze technology, where a camera is calibrated to respond to Jack’s left eye movements. He looks at an on-screen keyboard and the camera follows his gaze to know which letters, numbers, or symbols he is selecting. With the help of this advanced system, Jack is able to write at 20 words per minute and do complicated mathematics with an on-screen calculator.
“Because of his medical fragility, Jack didn’t attend school every day until 5th grade,” says Al Freedman, Jack’s dad and Headquarters (HQ) consultant. “He does advanced work in some subjects, and he’s a little behind in others. Overall, Jack does remarkably well in school.”
Jack’s teacher at Unionville High School in Kennett Square, PA, Ann Salisbury, couldn’t agree more. In fact, she values Jack’s accomplishments as a student as much as she does his generous and kind spirit.
“Working with Jack has been and continues to be one of the highlights of my life,” says Ann. “His love of school and learning is inspirational. He is thoughtful and kind, remembering many important details about the lives of his teachers, the staff, and his peers. Watching the happiness that he brings to those around him is very special and I am thankful to be part of his life.”
Al credits Jack’s nursing team with keeping him safe and healthy enough to go to school and participate in the activities he loves. BAYADA Nurses Katie Mitros, RN, and Stacy Kimble, LPN, in particular, have been caring for Jack for seven and five years, respectively.
“Day and night, Katie and Stacy are the glue that holds our care team together,” says Al. “They know him the best and Jack feels so safe under their care. Katie and Stacy have become part of Jack’s family.”
Jack’s family also includes his sister Cara, 15, who is “a very talented tennis player and musician,” according to her proud dad. “She is a wonderful sister to Jack and a very patient and understanding person. It’s not easy growing up with a sibling who has such complicated medical needs.” Click here to watch Cara’s video essay and song about Jack featured in the BAYADA TEDx series.
Although Jack can’t participate in every high school activity because of his physical limitations, he is greatly respected and appreciated by his peers. In fact, he received a ‘promposal’ (an invitation to the senior prom) from a classmate named Jane, who considered it an honor to have Jack be her escort.
“Jack had a great time at the prom! He was thrilled to have an opportunity to be there with Jane and his classmates,” shares Al.
Enjoying the moment is exactly the lesson that Jack has taught his dad. “As a parent of a medically-fragile child with an incurable disease, the future is now,” says Al. “Thinking back to that awful day 20 years ago when we received Jack’s shocking diagnosis, I feel so lucky every single day to have my son.” And for Jack, who is always smiling, every day is a new opportunity to just be Jack – the way it’s supposed to be.
The world according to Jack
Using his eyegaze computer, Jack answered these questions independently:
What activities and places do you enjoy?
The places I like to go to on the weekends are Longwood Gardens, malls, and museums.
Do you have any short-term plans?
I hope to go back to the Pennsylvania Vent Camp for one more year this summer and I have a BAYADA Awards Weekends trip that I’m going down to in Philly at the end of May.
Do you have longer-term goals?
I want to finish high school and look for a good job, but I need to figure out what kind of job.
Can you tell us a little about your care team and what they do for you?
My nurses take awesome care of me and I appreciate them a lot. I’m very proud that I’ve been getting good grades in my classes.
Who are the special people in your life? Why?
One of the special people in my life is Mrs. Salisbury, because she’s been an excellent teacher for me for the last seven years and works really well with me.