GORHAM — Jack Weeks left Portland in June, headed for the Delaware shore and beach days with his family. He came home on a cold December day to a house he’d never seen.
While swimming in the ocean in Delaware, the 16-year-old high school junior sustained a serious spinal cord injury that paralyzed him from the neck down. He spent months at a rehabilitation center in Atlanta undergoing medical treatment and learning how to fully live his life with incomplete quadriplegia.
While he was gone, his divorced parents sold their business, bought a new house to live in together, and spent months building an adaptive apartment that will allow Jack to be comfortable and independent.
“Twenty years ago this was a death sentence,” said Kip Weeks, Jack’s father. “Now there’s life still.”
After diving into shallow water, Jack damaged his C4 to C6 vertebrae and was instantly paralyzed. He has since gained some movement in his arms and fingers and continues to grow stronger with physical and occupational therapy.
Injuries to the C1 to C8 vertebrae can cause paralysis or weakness in both arms and legs. That area of the spinal cord controls signals to the back of the head, neck, shoulders, arms, hands and diaphragm. When the vertebrae are injured, all regions of the body below the level of injury may be affected.
An incomplete injury like Jack’s means that the ability of the spinal cord to convey messages to and from the brain is not completely lost and there may be some sensation and movement below the injury.
The National Spinal Cord Injury Statistical Center estimates there are about 17,800 new spinal cord injury cases each year and that there are fewer than 300,000 people living with spinal cord injuries in the United States. The average age at the time of injury is 43.
Vehicle crashes are the leading cause of injury, followed closely by falls. The most common causes of spinal cord injury among teens include diving and ATV accidents.
With current medical treatments and the hope for more advances in stem cell research, the Weeks family and Jack’s medical team expect him to live a life full of all the activities he wants to do. And Jack, who has always been an upbeat social kid, is determined to maintain his independence, hang out with his friends and someday walk again.
“A spinal cord injury doesn’t define who you are,” said Cheryl Linden, a staff counselor at the Shepherd Center in Atlanta who works with Jack and his family. “It doesn’t mean their life is over and they can’t have a fulfilling life. This is a bump in the road – and it’s certainly a big bump – but we can deal with it and move beyond it.”
A DAY AT THE BEACH
June 27 was a perfect day at the beach in Lewes, Delaware. It was warm and sunny and the beach was crowded with people. A young boy in a small kayak drifted away from the shore twice and Jack pulled him back in.
Jack and his cousin were playing on a floating mat, jumping off into the waves. Kip Weeks had warned his son to stop diving into the murky, shallow water. But after his parents left the beach to get lunch, Jack dove in again.
“Then I felt nothing immediately,” he said. “It wasn’t that I was scared – I just didn’t know what has happening. I was breathing water in and couldn’t move.”
Jack was able to signal his cousin to get him to shore. An emergency room doctor and a trained EMT were nearby and started CPR.
“I closed my eyes and let it happen,” Jack said. “I still wasn’t scared. My eyes closed, and that was that.”
Cammie Weeks was getting lunch with her younger children, 11-year-old Maggie and 9-year-old Gus, when Jack’s cousin ran up to tell her that her oldest son was hurt.
When Jack’s parents made it back to the beach, they saw the two people doing CPR and foam coming from their son’s mouth. Cammie Weeks held her other children and Kip Weeks dropped to his knees in the sand next to Jack.
“They were bringing him back. I couldn’t do anything,” Kip Weeks said. “I put my hand on his chest, and I just looked up at the sun and closed my eyes. I tried to give him as much energy as I could.”
Over and over, he told his son to just focus on breathing. To just breathe.
“You don’t think at that point that it’s as bad as it is,” Cammie Weeks said. “You’re just glad he’s breathing.”
When paramedics moved Jack onto a stretcher, his arms flopped down. They loaded him onto an all-terrain vehicle that brought him from the beach to an ambulance. His parents weren’t allowed to ride with him, so they followed in a car.
They were met at the hospital doors by a chaplain.
‘HE’S NOT GOING TO WALK AGAIN’
Inside the hospital, more than a dozen emergency room doctors and nurses were working to stabilize Jack and make sure he was breathing. They put a brace on his neck and straps on his forehead, chin and body to hold him still.
The doctors asked Jack what he could feel. He couldn’t feel anything.
“Buddy, what did you do?” Kip Weeks asked when his son’s eyes were open.
“I don’t know,” Jack replied. It’s the last thing he remembers before waking up in a rehabilitation center.
Minutes later, still in a bathing suit and covered with sand, Kip Weeks watched as Jack and his mother were rushed into a helicopter to fly to Nemours Alfred I. duPont Hospital for Children in Wilmington. Tears streamed down his face.
“I was screaming for him to fight and not give up,” he said.
Two days later, Jack had surgery on his C4 to C6 vertebrae. Starting with anterior surgery, his doctor shaved down the front of Jack’s C5 vertebrae and put a titanium bridge from his C4 to C6 vertebrae. The surgeon then turned him over and performed a posterior surgery that connected the C4, C5 and C6 with screws and rods. The surgery took more than 10 hours.
On July 7, the medical team performed a tracheostomy after realizing that Jack would not be able to breathe on his own without a ventilator. He had the trach for 10 weeks before he was able to wean off of it and breathe on his own.
Jack now has a long scar on the back of his neck that is identical to the scar his sister Maggie has from a surgery to fuse her C1 and C2, which were damaged in an accident at a store a few years ago.
During the 25 days Jack was in the hospital in Delaware, his parents never left his room. They took turns sleeping so one would always be awake to watch Jack. Jack dropped from 160 to 125 pounds as he lost muscle from not moving.
“No one ever said, ‘Your son is a quadriplegic.’ I had to ask is he going to walk, and a nurse said, ‘No, he’s not going to walk again.’ It destroyed us,” Kip Weeks said. “When someone first says that to you, all your hopes you were hoping for are shattered. We were in complete horror for two days. We were so sad for my son.”
Then they turned to intense research, advocating for their son and focusing on the wins.
“My son didn’t die. He drowned and we got him back. He didn’t have brain damage and he got off the ventilator. All massive wins,” Kip Weeks said. “You’ve got to look at the wins in this type of situation.”
For rehabilitation, Cammie and Kip Weeks chose the Shepherd Center in Atlanta, one of the nation’s top rehabilitation centers, because it has an adolescent program. They fought to get approval from MaineCare, under which Jack was insured, to get him to that facility instead of Spaulding Rehabilitation Hospital in Boston, which does not have a program specifically for teens.
After the request for Shepherd was denied, Kip Weeks called the offices of Sens. Angus King and Susan Collins. He was finally able to connect with someone in Gov. Janet Mills’ office who listened to Jack’s story and got in touch with MaineCare, he said. The next day, Jack was approved to go to Atlanta.
‘GRATEFUL FOR WHERE I AM’
The Shepherd Center, a nonprofit rehabilitation center, focuses its adolescent spinal cord injury rehabilitation program on returning teens to the highest possible level of functioning and independence. It also emphasizes the teen’s social and emotional development and preparing families for life with a spinal cord injury, said Linden, the staff counselor.
“I want them to see their life is more than their injury. At some point, I want that injury to take the backseat,” she said. “It doesn’t have to be the defining thing about who you are because it’s not.”
Jack spent every day in physical and occupational therapy, working on English and math with a tutor, and doing activities. On the first day of physical therapy, everything Jack did felt hard.
“It made me mad. They told me eventually things will wake up and I’ll get stronger,” he said. “Now I’m grateful for where I am.”
At first, Jack was hesitant to meet the other kids in his program. There were a total of eight teens ages 15 to 20 in the program during Jack’s stay, all at different stages after their injuries.
“I thought they’d be awkward and messed up, but it wasn’t like that at all,” he said.
He became close friends with boys his age with similar injuries from diving and ATV accidents. They raced around the halls in their wheelchairs, pulled pranks, snuck into the gym to listen to music and had movie nights. They gave each other nicknames based on how they were injured; Jack was called “Sandman” because of the amount of sand in his lungs after his accident.
“No one really understands what you’re going through except the people going through it,” Jack said. “Instead of just talking to therapists, I could talk to my friends who know exactly what I’m going through.”
Jack’s reputation for socializing and drawing other kids out of their rooms prompted some to call him “the mayor.” Doctors would give him a heads-up when a new patient was arriving so Jack could welcome them.
“Jack helped bring up the other kids. Everyone is going to get sad, but he’s one of the most positive people,” Cammie Weeks said.
Jack grew stronger during his time in Atlanta. He can now pinch two fingers on his right hand together. He said his left arm, dubbed “Lefty,” finally joined the party and he now feels tingling in his fingers.
He accomplished the goals he set for himself: More independence with eating, drinking and bathing. Scratching his own itches. Trying out new activities. Balancing so he doesn’t fall to the side when he leans.
Jack and his parents also had to learn to handle his autonomic dysreflexia, a syndrome common in people with spinal cord injuries that causes a sudden onset of excessively high blood pressure. Dysreflexia occurs when something is happening below his injury – a full bladder, an itch, the bowel being backed up – but the signal can’t get to his brain to tell him what it is.
Jack spent 101 days in the inpatient program, then shifted for 46 days to the outpatient program, where he lived in an apartment on the Shepherd campus with a parent. Only one parent at a time could be with Jack because of the coronavirus pandemic and visitors were not allowed. Cammie Weeks spent all but three weeks of that time in Atlanta. This fall, she came home for the first time since the accident to spend time with Maggie and Gus while Kip Weeks stayed with Jack.
At Shepherd, Cammie and Kip Weeks learned to take care of their son’s medical needs, including emptying the bladder and bowel, and how to move him using a Hoyer lift. They all went to counseling, an aspect of the program they see as critical. Cammie Weeks bonded with other parents over their shared experiences and grew especially close to the medical staff.
“These people are amazing. They’re the most giving and loving people I’ve ever encountered,” Cammie Weeks said. “It put my faith back in humanity.”
While Cammie Weeks was with Jack in Atlanta, Kip Weeks was home in Maine taking care of the other children and making sure Jack could come back to a house he could live in comfortably.
Kip and Cammie Weeks divorced years ago, but remained close friends and co-parents. After the accident, they decided to give up Kip’s condo in South Portland, sell the family house in Portland and move into a house in Gorham where they could all live with Jack. Cammie’s boyfriend also lives with the family and has helped convert the house for Jack. Kip Weeks calls it his “weird modern family.”
“Jack said, ‘I had to get hurt to have us all move back in together,’” Cammie Weeks said.
In order to buy the house in a competitive market, they sold their share of Eco-kids, the company Kip and Cammie Weeks founded a decade ago. Kip Weeks also took out a $100,000 personal loan.
After a discouraging search for a house that would work for the family, Kip Weeks happened to drive past a house for sale in Gorham. Set back from the road, the house has a two-car garage and a pool in the back where he hopes Jack will do physical therapy next summer. The town allowed him to convert the garage to an in-law suite the family calls “Jack’s Lair.”
The family is spending about $40,000 to create a suite with voice-controlled lighting and heating systems, an adaptive bathroom and a separate living room area so Jack won’t feel like he’s confined to a bedroom. They’ve tried to keep costs down by relying on friends and family to help with construction.
The family has also had to face the other daunting costs that come with spinal cord injuries.
In the first year after an accident like Jack’s, expenses can reach over $2 million, including home care, medical supplies, medications and equipment. Jack’s wheelchair cost $24,000, his hospital bed was $3,000 and his parents hope they can find a used wheelchair-accessible vehicle for less than $50,000. Until they do, they can rent a van for $200 a week to get Jack to appointments.
Next summer, Jack will spend six weeks at the Shepherd Center working on goals like using a manual wheelchair, building his core strength and doing slide board transfers. That will cost $2,500 per week. And there could be other unknown expenses in the future for clinical trials, stem cell therapy or epidural implants to stimulate the spinal cord.
Insurance covers only some of that cost and families are encouraged by their medical teams to turn to fundraising to help offset the expenses. The Weeks family created a fundraising campaign with Help Hope Live, a nonprofit organization that collects donations for patients and pays medical costs directly. The family never handles the money.
So far, more than $74,000 has been donated to help cover Jack’s medical bills.
“They say you have to raise several hundred thousand dollars and it’s overwhelming,” Kip Weeks said. “I know people want to help. It’s hard to ask for it. It’s humbling.”
His parents didn’t know until recently that Jack had been sending thank you text messages to everyone who helped with construction at his new house.
ADJUSTING TO THE ROUTINE
Four days before Jack came home, it was busy at the new house in Gorham. Maggie and Gus worked on schoolwork with their grandmother. Cammie’s boyfriend and a small crew worked on Jack’s Lair. A medical supply company delivered Jack’s wheelchair and a hospital bed.
“He needs to come home and feel we have a space for him,” Kip Weeks said between signing paperwork for the wheelchair and making a smoothie for Maggie.
Everyone was eager for Jack and his mom to come home, but perhaps no one more than Gus and Maggie. And Jack was excited to see his brother and sister. They had stayed in touch on video calls, but it wasn’t the same. Sometimes Jack’s best friends would come over to the house to watch Maggie and Gus, and Jack would join in by FaceTime. Before he got home, Maggie and Gus took turns trying out Jack’s new wheelchair.
After 25 days at the hospital in Delaware and 147 days at the Shepherd Center, Jack flew home to Maine on Dec. 11.
Jack’s new space will be ready in the next couple of weeks. Until then, he’s sleeping in a temporary bedroom on the first floor.
The family’s days are now filled with adjusting to their new routine. Jack will have physical and occupational therapy three days a week and does arm and leg stretches every day. He’s about to start the second trimester at Casco Bay High School, where he is a junior. He’s been busy reconnecting with local friends, staying in touch with the friends he made in Atlanta, and playing video and board games.
“It’s going to be the same as it’s always been except we’re moving him in and out of bed. He’s very independent,” Cammie Weeks said. “It’s not all easy, but what in life is.”
There are days, of course, when Jack wonders why this happened to him, when he misses doing certain things, when he doesn’t want to feel stuck in a wheelchair.
“The rest of the time this kid is the most positive 16-year-old you could ever imagine,” his dad said. “We tell him the outcome isn’t going to be decided today. It’s not going to be tomorrow, next week, six months from now or a year.”
Jack said he’s grateful for where he is now and tries to focus on being positive.
“I’ve never been a sad or depressed kid. I like to do fun things,” he said. “I don’t really get sad. I always have a positive mindset, except when it comes to school.”
Jack, who often wears the hood of his sweatshirt pulled up over his dark hair, wants to get stronger and play sports again. He’s working on playing video games the same way he did before his accident. His long-term goal is to walk again.
“But I’d rather have my bowels and bladder back,” he said. “Maybe my fingers.”
Jack isn’t afraid to talk to people about his injury, but he’ll also pepper in “bad dark humor jokes.”
“When people say they’re depressed and want to die, I say, ‘I have, and it’s not fun,’” he said.
Jack and his family have found that humor goes a long way when living with a spinal cord injury. There are lots of poop and pee jokes, and everyone guesses how much urine will come out in the catheter when it’s emptied. All of that has brought the family even closer, Cammie Weeks said.
“We’re trying to take it day by day,” she said. “As long as he’s smiling, we’re good.”
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