Shannon Williamson had already been in and out of various hospitals by May 1, 2020.
Then 13 years old, Shannon was due for fusion surgery to correct an S-shaped spine — a result of being born with scoliosis, which had contributed to many illnesses and hospital visits to that point in her life.
“Scoliosis had moved a lot of her organs to where they should not be,” mother Danielle Williamson said. “So her lung capacity was less than ideal.”
At Nemours Children’s Hospital in Wilmington, Delaware, nurses wheeled Shannon into the operating room at 8 a.m. that first Wednesday in May 2020.
“I didn’t see her again until 1:30 a.m. the next day,” her mother recalled.
Two rods and 22 screws were inserted from the top to the bottom of Shannon’s spine. The fusion surgery lasted nearly 16 hours.
“Shannon rocked it,” Danielle Williamson said. “She always makes me laugh because she’s labeled ‘medically fragile.’ This child has been through more in nearly 15 years than most of us will see in an entire lifetime. And she always comes out on top. So she’s got to have some fight in her.”
The fight runs in the family. Shannon, 14, is a student in the Warwick School District, the youngest of the four Williamson girls.
Older sisters Emily and Jessica Williamson are both former multiple-sport student-athletes at Warwick. Emily is now a junior at Elizabethtown College. Jessica, who played basketball with a herniated disc as a Warwick junior, is now a multi-sport student-athlete at Delaware Valley University.
Aubrey Williamson, the third in the line of Williamson sisters, is a Warwick senior and multi-sport student-athlete, currently the top defender for the Warriors’ girls basketball team this winter.
“They’re three of the most athletic kids I’ve coached,” Warwick girls basketball coach Danny Cieniewicz said. “They’re all tenacious defenders, too. They’re all small, but they’re all bulldogs.”
Danielle Williamson has essentially been on her own raising her four daughters since her November 2016 divorce.
Sports has been the glue keeping them together. And for mother Danielle and the eldest three Williamson sisters, Shannon has been the force driving them forward.
Learning to adapt
Before each soccer game at Delaware Valley last fall, Jessica grabbed a black Sharpie and wrote “Shannon” on her left wrist.
“Sports has taught me how to manage my time,” Jessica Williamson said. “And when things don’t go as you thought they were going to go, it’s OK. It might not feel OK at the moment. But it will be OK. … Growing up we learned to be more adaptable just because of Shannon. Sports was an extra channel for that.”
Shannon is often on the sidelines in a wheelchair at her sisters’ sporting events.
“She is a forced sports fanatic because she is our sister,” Emily Williamson said. “Shannon is probably the sassiest out of all of us. She can’t talk to us, but she finds other ways to communicate with us. We can tell whenever she thinks we’re ridiculous.”
Shannon likes country music. Her favorite books are of the adventure and mystery genre, such as the “Harry Potter” and “Chronicles of Narnia” series.
Shannon has severely limited mobility and is nonverbal. She communicates with her eyes or facial expressions. For example, a teacher comes to the Williamson house for an hour each day to instruct Shannon, sometimes reading a book and then quizzing Shannon afterward.
“The teacher will give Shannon choices on two boards. She has to look at ‘yes’ or ‘no’,” Danielle Williamson said. “Or she’ll have to look at choices.”
Shannon was born March 6, 2007, at the Women & Babies’ Hospital in Lancaster. The first red flag went up at Shannon’s four-week checkup with a pediatrician: She had lost weight since birth, and was soon admitted to Lancaster General Hospital.
On the second day of a weeklong stay at LGH in April 2007, Shannon had her first seizure. A doctor informed Danielle he believed Shannon was blind, deaf and would most likely live in a vegetative state.
“I thought my whole world was ripped out,” Danielle Williamson recalled.
Reflux medicine fixed Shannon’s growth problems at the time. But she showed signs of a decline in eating at six months of age. It eventually led to a gastrostomy tube, or G-tube, being inserted into Shannon’s belly on March 7, 2008, a day after her first birthday.
By late 2016, when Shannon was 9, she underwent another surgery to have a tracheostomy, a trachea tube placed in her throat.
“I fought that for a long time,” Danielle Williamson said. “Which is why we spent so many winters in a hospital at length. She was so prone to illness. Respiratory-wise she couldn’t manage. She was a really sick kid.”
Even then, the Williamsons were left searching for answers as to what may have been causing Shannon’s issues. Those answers came much later, while she was recovering from the spinal fusion surgery in May 2020.
An answer at last
Upon Shannon returning to the Williamsons’ Elizabeth Township home after her 2020 surgery at Nemours Children’s Hospital, Danielle Williamson opened the packet of results from Shannon’s latest genetics test. After 13 years, the Williamson family finally had an answer that helped explain Shannon’s medical history. She had been diagnosed with WWOX, an abbreviation of an enzyme and associated gene located in Chromosome 16. The syndrome was first discovered in 2007, the year Shannon was born.
It’s so rare, the medical world is still figuring it out. But its many symptoms checked almost all of the boxes for Shannon — seizures within the first two months of life; inability to crawl, walk or talk; inability to sit upright unassisted; feeding problem requiring a G-tube; difficulty breathing; scoliosis; severe cognitive impairment, and other ailments.
“It was surreal for the doctor to hand me the paperwork about it,” Danielle Williamson said. “It was Shannon. So at the end of it, there is an answer. It doesn’t change anything that we did with her. I didn’t miss out on any treatment or the way I raised her or what I did or did not do for her. It’s more so comforting for us to know.”
One downside of the spinal fusion surgery is that Shannon, already small for her age as a result of the WWOX syndrome, would no longer grow.
“She’s 14 and the size of about a 4- or 5-year-old,” Danielle Williamson said.
But Shannon’s health has improved considerably since the surgery.
“She’s been the healthiest the past two years than she has her entire life,” Danielle Williamson said.
Added responsibilities
Sometimes Shannon’s trachea tube needs to be suctioned to clear her throat of phlegm in order for her to be able to breathe. It’s one example of why she needs around-the-clock care. This became an issue when the COVID-19 pandemic caused a shortage of home-care nurses when Shannon returned home from Nemours duPont. In the absence of nurses, the three elder Williamson sisters, all home from school because of the pandemic, stepped up to help with Shannon.
“I learned things such as how to change out the trachea” tube, Aubrey said. “I learned how to do all of that so I could watch her.”
Danielle Williamson, 48, works about 20 hours a week as a pharmacist. Combine that with Jessica and Emily away at college, and Aubrey’s responsibilities at home have increased.
“If Shannon’s home nurse calls off work, but my mom has to go to work, I’ll stay with Shannon on a Saturday if my mom has to go to work,” Aubrey said. “Sometimes I’ll sleep in her room at night. It’s always anything I can do to help my mom.”
Aubrey also works parttime on the weekends as a cashier at the Weis Markets grocery store in Lititz.
“To me, it’s normal,” Aubrey said. “But if my peers would ever see that, they’d be like, ‘Whoa.’ They’d be shocked. They don’t understand the full dedication and responsibility it takes to take care of a sister like Shannon.”
“If Aubrey or Jessica or Emily were having a bad day,” Cieniewicz said, “we know there are other circumstances. They’re not so much open in wanting to talk about it and that’s OK. Their teammates know they are going through adversity. That carries over well with sports. You have to be able to deal with adversity.”
Given the circumstances, all three elder Williamson sisters feel they have grown up faster than their peers.
“We call Shannon our mystery sister because she always has something new that confuses us,” Emily Williamson said. “She has taught me to be patient.”
“Having a sister like Shannon has made me less judgmental and more openminded,” Aubrey said. “I never assume what other people are going through because people don’t know what I’m going through.”
Having each other’s backs
When the Williamson sisters were Warwick girls basketball teammates a few years ago, Cieniewicz learned quickly it wasn’t a good idea to have the sisters defending each other in practice.
“You had to separate them at times because they couldn’t guard each other,” Cieniewicz recalled. “Things got so competitive between them.”
Life at home isn’t always rosy, either.
“We joke that we’re either best friends or each other’s worst enemies,” Emily Williamson said. “When we’re getting along on the field or at home, we’re getting along really well. But when something goes wrong, we’re each other’s worst critics.”
“They’re typical sisters and they fight,” Danielle Williamson said. “But at the end of the day they all have each other’s back.”
A perfect example came last October, when Aubrey wore a Warwick girls soccer uniform for the last time on the Warriors’ Senior Night. Emily drove from Elizabethtown College to pick up sister Jessica, who got permission to miss soccer practice at Delaware Valley University. They floored it to Lititz, arriving to the Warriors’ girls soccer game five minutes before it began. It was important for them to be there for Aubrey.
“I appreciate that,” Danielle Williamson said. “I feel like I’m doing something right.”
As Aubrey hits the milestones of her senior year of high school, she’s also getting closer to departing for college next fall, leaving the house to mom and Shannon.
“It is going to be different next year,” Danielle Williamson said. “Next year Aubrey is not going to be here. How are we going to do this?”
It’s here Danielle Williamson reminds herself how her family has persevered to this point.
“As we conquer everything, I look back and think, why did I think I couldn’t conquer that? I did it.”
It helps ease her mind with the question marks of the future.
“People sometimes tell me, ‘Oh, I could never raise a child like Shannon,’ ” Danielle Williamson said. “They say, ‘You’re an amazing mom. I could never raise a child like Shannon.’ I look at them and I’m like, ‘I hope you would. I wish you would. It’s your child.’ … You figure it out and you do it. Shannon has taught me a lot about what’s important.”
“I love her,” Aubrey said of Shannon. “She’s definitely my favorite person.”
