Dignity can’t be boxed. Independence can’t be wrapped. And the ability to feed yourself a bowl of Cap’n Crunch clearly can’t be stuffed inside a gift bag. But these are the priceless presents that Kevin Schaefer of Cary has received this Christmas through the marvel of a $53,000 robotic arm called JACO.
The givers number in the hundreds. From Kevin’s cash-strapped college friends who gave $10 each to the two Jersey Mike’s restaurants that raised thousands, more than 300 people participated in a six-month GoFundMe effort that reached $40,000.
But it was the determination of Laurie Paquet at Kinova Robotics, which manufactures JACO, and the generosity of Harmonic Drive, the company that makes the robot’s many gears, that led to Kevin’s being surprised with the arm in time for the holiday.
The N.C. State student has spinal muscular atrophy and has used a wheelchair since he was 2.
At Paquet’s request, Harmonic Drive enthusiastically donated the rest of the money. And at Paquet’s urging, the arm was delivered to Kevin, 22, with all the sneakiness of Santa.
“I wanted Kevin to be able to enjoy this time with a little bit of magic, happiness and independence,” said Paquet, a vice president for the Quebec-based Kinova. “Kevin will discover a complete new world of possibilities with his new friend.”
His world so far has often seemed colored by cruelty.
A devastating day
When Kevin was diagnosed with the progressive motor neuron disease at 19 months, his parents, Glenn and Cindy Schaefer, were told their brown-eyed baby likely wouldn’t see his 18th birthday.
I remember the devastation of that day because Cindy, a News & Observer correspondent, is my best friend. Our boys are eight months apart.
Over the past two decades, we’ve been forced to watch as SMA has robbed her child of nearly everything he could do for himself, one simple skill at a time.
Never able to walk, he lost his ability to sit unsupported by second grade. Many of his treasured action figures, mere ounces of plastic, eventually became too unwieldy. The endless hours of video games that captivated our boys faded away once Kevin was relegated to spectator because his hands would no longer cooperate.
When he began college in 2012, the English major could still write. Today, he can manage only his initials and only if someone holds the pen in his hand.
The final spirit-crushing indignity: He can no longer feed himself.
“To completely lose his fingers has been devastating,” Cindy said. “There’s no compensation for that. He used to be able to compensate for a lot of things, but there’s no compensation for losing his arms.”
In May, Kevin was invited to try out the JACO arm at a demonstration at Duke University. Only about 20 people living with disabilities in the United States – and 200 worldwide – have one. When Kevin was able to bring a cup to within drinking distance with minimal instruction, securing a JACO became imperative.
Naturally, insurance doesn’t cover such an expense, so Kevin suggested that the family set up a GoFundMe page.
“Because Kevin believes, so do we!” Cindy said in welcoming visitors to the site.
So many acts of generosity followed. An apartment complex and two Jersey Mike’s in Chapel Hill – where Glenn, a beloved UPS driver, has had the same route for more than a decade – held fundraisers. Ultimate Comics, where Kevin has many friends, gave a portion of convention ticket sales. A church Kevin’s grandparents attended years ago sent donations.
And Harmonic Drive contributed that last $10,000-plus so that Paquet at Kinova could orchestrate her Christmas blessing.
Over the months, Cindy had been in contact with Kinova about the family’s fundraising and what we hoped would be a forthcoming order. In November, however, when progress stalled, I received a message through Facebook saying Paquet wanted to surprise the Schaefers with the arm before Christmas. She needed someone in North Carolina to make it happen. Would I be willing?
Would I be willing? Excuse me while I turn some cartwheels first.
The ruse is set
In early December, Kinova shipped JACO to my house and then flew in its exuberant installation expert, Abe Clark, who had shown Kevin the arm at Duke in the spring. When Abe and I met in a church parking lot near Cindy’s house, he greeted me with a joyful running bear hug that swung my feet off the ground.
“I love this kind of stuff, to be able to give him independence after he’s been waiting so long,” Abe said. “It’s going to be pretty amazing.”
At lunch that week, I had casually told Cindy I was coming over the next Saturday with an action-movie something-or-other gift for Kevin. What I took them was two boxes and Abe.
“Do you recognize this man?” I asked all the Schaefers as Abe headed up to the house behind me.
“The man from Duke!” Glenn said, puzzled. Why would the man from Duke be standing in their yard? Then comprehension crawled across all of their faces, followed by tears.
“To say I was surprised would be the understatement of the year,” Kevin said.
Within the hour, Abe had JACO installed on Kevin’s wheelchair. The joystick that controls the chair now also manipulates the arm.
Minutes later, Kevin was able to push up his own glasses on his own nose for the first time in his life. He picked up a cheeseburger and gave himself bites. He ate a honey bun with a fork. And he shook his mother’s hand.
“You have to understand,” Cindy said. “He is a 22-year-old young man who has had to endure waiting on other people to feed him. To be able to do it himself is a blessing beyond measure.”
As will be getting into an elevator at NCSU without having to ask a stranger to ride with him to push the buttons.
And grabbing lunch off-campus alone – alone! – without having to find someone willing to put his food in his hands and to prop his hands on his cup.
And, on Christmas, maybe even unwrapping his own presents.
“There are no words to thank them,” Cindy said of Kinova and Harmonic Drive and all of those who contributed to get JACO for Kevin. “I don’t know whether they know what it means. It’s more than just a gift. It’s changing his life.”
After one heartbreaking loss after another, for Kevin to gain so much, for him now to be able to extraordinarily accomplish the ordinary, is truly our Christmas miracle.
Wheeler: 919-829-4825, email@example.com, @burgetta_nando
The JACO story
The robotic arm is named after Jacque “JACO” Forest, a man living with muscular dystrophy who designed a makeshift arm that was able to pick up objects. His nephew Charles Deguire expanded on his idea, and in 2006 he founded Kinova in Quebec, Canada, with fellow engineer Louis-Joseph Caron L’Écuyer.
Available since 2010, JACO is a six-axis robotic manipulator arm with a three-fingered hand. It helps those with decreased upper-body mobility to perform complex actions, but numerous research universities and corporations are also using the JACO.
Harmonic Drive, based in Massachusetts, manufactures the gears that help the arm maintain its accuracy and seamless motion.
What is SMA?
Spinal muscular atrophy is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Because it involves the loss of nerve cells in the spinal cord, it is classified as a motor neuron disease. The progressive disease primarily affects muscles, which don’t receive signals from the nerve cells. Because the muscles are inactive, they atrophy.
There are four primary types of SMA, with the diagnosis based on age of onset and the highest physical milestones achieved. SMA Type 1 is the No. 1 genetic killer of children in the world, with most children affected dying by age 2.
Kevin Schaefer has Type 2, usually diagnosed after 6 months of age but before age 2. The first sign is often a delay in meeting motor milestones or failing to meet milestones entirely.