For 13-year-old Zack Edge, playing the drums came naturally ever since he laid his eyes on his very first drum set at 3 years old.
Yet other parts of Zack’s life didn’t come so naturally, such as his ability to stand or walk.
“Zack was born with cerebral palsy,” said his mother Sara Edge, “and over the course of his short lifetime he’s gone through a lot and has had to overcome so much.”
Cerebral palsy (CP) is a condition that affects muscle movement. The muscles of some children with CP are stiff and rigid, which is called spasticity that leads to stiffness in the muscle and joints causing movement to be very difficult.
“It wasn’t until we went to Seattle Children’s that Zack’s life completely changed,” said Edge.
A melancholy start
Zack was born 28 weeks premature at only 2 pounds, 9 ounces.
Edge met Zack when he was 2 weeks old and was later adopted into her family. With Edge’s experience as a nurse practitioner, she knew what to expect in taking care of a delicate baby like Zack.
“We spent 75 days in the neonatal intensive care unit after he was born,” said Sara. “I remember he was such a cute and tiny little fellow.”
Growing up, Zack was inspired by watching WWE wrestling matches and NBA games on TV and strived to be able to move as quick as the athletes he saw on screen.
Watching him over the years, Edge, her husband, Mark, and Zack’s brother, Erik, worked their hardest to give Zack the opportunity to reach his full potential, so the family searched for possibilities to help him gain the mobility he desperately wanted.
“Although we had been getting great care for Zack in our hometown of Spokane, Washington, we decided to seek out other options,” said Edge. “Then after we started talking to friends about the great experiences they had over at Seattle Children’s, we decided to go there to see what they could offer us. I wish we went sooner because some of the most profound changes have happened since we went there.”
In 2015, when he was 10 years old, the family drove Zack over 200 miles from Spokane to Seattle Children’s for a consultation for a special surgical procedure that could significantly improve Zack’s mobility.
“Selective dorsal rhizotomy (SDR) is a complex surgery done on the lower spinal cord to reduce spasticity in the legs,” said Dr. Samuel Browd, a neurosurgeon in Seattle Children’s Neurosciences Center. “The goal of SDR is to relax the muscles by identifying and cutting only those nerve fibers that contribute to spasticity.”
When it is followed by months of rehabilitation, SDR can improve a person’s ability to move and control their muscles.
Seattle Children’s is the only hospital in the Pacific Northwest with the expertise to offer SDR and comprehensive inpatient rehabilitation.
“Going into the SDR surgery, I was scared at first, because I knew it was a really complex surgery and I didn’t know what to expect,” said Zack. “All of it was very hard to take in, but I knew my team at Seattle Children’s would take care of me.”
After a long recovery and an outpouring of support from his care team, Zack noticed positive changes in his body.
“Zack had a really great outcome from the surgery,” said Browd. “He was more functional and able to participate in various activities that he couldn’t do before.”
With daily rehabilitation therapy, Zack grew stronger.
“Before SDR, I couldn’t even stand or get dressed,” said Zack. “It gave me the ability to do those things and made me more independent, opening up a whole other door of opportunity for me, and I kept getting stronger every day.”
The journey strums on
Although he made a lot of gains with rehab after undergoing SDR, Zack still had difficulties in walking and standing due to his legs being stuck in one position.
“SDR helped with Zack’s spasticity, but there were still residual issues,” said Dr. Suzanne Yandow, an orthopedic surgeon and chief of Seattle Children’s Orthopedics and Sports Medicine Department. “To help correct the soft tissue and bone abnormalities that were affecting his lower extremities, we decided to perform a single-event multilevel surgery (SEMLS).”
SEMLS is a procedure done on lower extremities like the hips, knees, ankles or feet. It involves multiple corrections for existing soft tissue and bone problems, and is done to allow for more balanced muscle and joint function.
On December 2, 2016 – Zack’s 12th birthday – he underwent SEMLS.
The procedure was successful, and Zack was greeted with birthday presents and decorations lining the walls of his hospital room once he came out of surgery.
“When I saw Zack after the surgery he told me something I’ll never forget,” said Yandow. “He said, ‘you gave me a great birthday present,’ and when I asked what it was, he replied, ‘it’s that you operated on me and took good care of me.’”
Although the surgery worked well in getting his legs straighter, as time and many months of rigorous rehab passed, there were still problems that needed to be addressed.
In February 2018, Zack was back at Seattle Children’s for what would be his 14th surgery. Zack saw Yandow again to undergo bilateral hip osteotomies, which involve repositioning the pelvic and femur bones, and using metal to hold them in place.
“Due to the years of spasticity that Zack endured, his hips would constantly get dislocated,” said Edge. “We were hoping this would help Zack to stand and walk with better ease.”
But Zack had some unique challenges due to his severe allergic response to some metals. Yandow and her team worked to identify the type of metal they could use, and then on July 23, 2018, he underwent surgery.
Moving forward one drum beat at a time
Zack is now more mobile and stronger than ever.
“I’m doing a lot better than I ever thought I would,” said Zack. “Where I am today is a big step from where I was. I feel blessed for everyone at Seattle Children’s who helped me through everything.”
Zack is also now back to playing his drums at home and now he’s gearing up to play on the big stage in front of more than one thousand people.
“Over the years while I was recovering from my surgeries at the hospital, David Knott, a music therapist at Seattle Children’s, would visit me in my room often and play music,” said Zack. “We would bond over my love for drumming and talk about music, and just have a good time.”
After Zack’s most recent surgery, David called him about a special opportunity that left Zack speechless.
“David said that he knew a symphony composer that needed help with his next big concert,” said Zack. “He asked if I was interested in playing drums at the composer’s concert, which completely took my breath away.”
Although it took some time for Zack to process the question, he ultimately said “yes.”
In preparation for the big performance, Zack has been sharing some of the music he’s written with the composer he’ll be playing with, which happens to be Grammy award-winning film composer, Mateo Messina, for his annual concert that benefits Seattle Children’s.
“It’s really cool that Mateo raises money for the hospital through something like this,” said Zack, “and I can’t wait to be a part of it.”
Messina is the founder of Seattle Children’s LUMA Guild, which is dedicated to financially supporting children and families undergoing treatment at Seattle Children’s and funding innovative research aimed at curing pediatric cancer. For 20 years, their volunteer community has raised awareness and funds through a one-of-a-kind annual benefit concert composed by Messina. Each year features a unique musical experience and noteworthy artists.
This year’s performance, “The Feast,” will take place at Benaroya Hall, featuring Seattle chef Tom Douglas, Autumn Martin of Hot Cakes, Lisa Baer of Baer winery, Siri and Jason Salvo of Local Roots Farm, and Make Tow of El Gaucho. A full orchestra and choirs will emotionally score five short documentaries about these artists whose subject is food. The films explore the massive, yet unseen efforts each of these artists passionately puts into their craft.
Edge made sure Zack’s care team knew about his big onstage appearance and a few of them plan to sit front and center to see him perform, including Browd and Yandow.
“I’m excited to see him out and doing activities that would have been harder for him to do before the care he received,” said Browd. “This is an amazing opportunity for him and I look forward to attending to cheer him on.”
Yandow knows Zack’s love for drums well, as he has always asked her how soon he would be able to play the drums after his surgeries.
“I can’t wait to see him up there doing what he loves,” said Yandow. “Zack is such an articulate, kind and caring young man, and seeing him become more independent is inspiring. I can see that a lot of his courage comes from the help of his family who are his biggest cheerleaders.”
With the many hurdles Zack has experienced over the years and all that he’s overcome, Edge couldn’t be more grateful for the care team at Seattle Children’s and everything they’ve done to get Zack to where he is now.
“The doctors, nurses and staff at Seattle Children’s are extraordinary,” said Edge. “As a parent, it’s amazing to see how much they truly care about your child – these people have become like a second family to me.”