Saratoga Springs Students Rally to Help Disabled Graduating Senior Achieve Independence
SARATOGA SPRINGS – Jordan Klapp, a graduating senior at Saratoga Springs High School, stopped walking when he was nine years old. Despite his lifelong struggle with Duchenne Muscular Dystrophy (DMD), a genetic muscle-wasting disorder for which there is no current treatment or cure, the 18-year-old is graduating this month with a Regents diploma and hoping to head to college, just like his classmates.
The future of this bright young man who is intent on an engineering degree became a little dimmer this year as his condition deteriorated to just limited use of his hands. He has not been able to feed himself or scratch his head or have any of the simplest mobility most people take for granted.
But all that just might change.
Gwen Holbrook-Klapp, his mother, was introduced to the JACO robotic arm by another mother last August. Manufactured by Kinova Robotics, a company based in Montreal, the arm costs $53,000. “I was afraid to show it to my son and get his hopes up, but he’s 18,” she said. “He decided he wanted to see it in person, so I called Ron.”
Ron Borgschulte, principle at Partners in Medicine, LLC in St. Louis, MO, a distributor of Kinova Robotics, brought the JACO arm to Saratoga Springs and taught Klapp how to use it to eat, pour water, turn on a light switch, and even allowed him to keep it for a day. Klapp took it to school and everyone was excited to see what he could now do by himself.
“His mother’s email to me back in November put tears in my eyes,” said Borgschulte. “It’s a very powerful experience to see folks get this arm on for the first time and be able to do so many things we take for granted. Jordan’s a great kid and his mom is a dedicated individual. I have no doubt she’s going to get this done.”
If his hands are in his lap, Klapp has enough motor function to write or manipulate a joystick to operate his chair or play video games. The JACO arm installs into the chair’s operating system, so with the simplest finger movement on the joystick, he’ll once again be able to feed himself, open doors, pick up something he drops, scratch an itch, open a refrigerator and get himself a drink, and feed and pet his loyal Patriot.
Klapp and his service dog, Patriot, have been together for three years. The service dog can get Klapp out of the house in an emergency and can open automatic doors for him, among other things.
“You’d be surprised how many times automatic door openers are blocked by a garbage can,” said Holbrook-Klapp. “Patriot can’t move a garbage can. As helpful as he is to Jordan, he’s limited by the simple fact that he’s a dog. If Jordan gets on an unfamiliar elevator for a doctor’s appointment or something, Patriot has to hit every button to get to the right floor.”
Klapp stated on his fundraising website, “I have been on the losing end with this disease and JACO allowed me to be on the winning side and the taste of victory was sweet.” He added, “JACO will give me the freedom to live a fuller and more productive life. Although my parents will do anything for me, it would feel so good to ask for less.”
The JACO arm has only been available in the U.S. for about two years, and according to Holbrook-Klapp, insurance companies want to try everything else first. “Jordan doesn’t have any muscle, so other options don’t work,” said Holbrook-Klapp, who drives a school bus for the district. “Medicaid would rather put someone in my house to take care of Jordan, but he wants to go to college and we’re desperate to keep him as independent as possible.”
This isn’t the first time that Klapp’s parents have faced an uphill battle with Medicaid and private insurance companies. Klapp’s oldest brother, Matthew, also had the disorder and passed away at age 19 in 2008. His 24-year-old brother, David, does not have the disorder, but has been there for both his brothers and his parents.
Holbrook-Klapp said, “I fought the fight, tooth and nail, for my oldest son, and when I looked at that arm, I realized I just don’t have the battle.” Her voice broke as she said, “I’m just not up for the battle with insurance. Not again.” So she initially put the expensive device out of her mind.
But her resolve returned the next time she saw the arm and she contacted the company to ask for help. They put a video together and started a donation page on a crowdfunding site, ReachYourPotential.org, that gives 100 percent of all donations to Klapp.
“Then NewsChannel 13 did a story and donations picked up,” said Holbrook-Klapp.
Klapp’s social studies teacher, Terry Jones, a football coach at Saratoga Springs High School, said, “When I saw the NewsChannel 13 story, I couldn’t stop thinking about it. Jordan wasn’t in class the next day, and so I mentioned the story to the rest of the class. Everyone wanted to help.”
Klapp is a familiar sight in the school halls with his wheelchair and Patriot, his black service dog. “Jordan is a wonderful person,” said Jones. “It’s no surprise so many people want to see him get this arm.”
The students decided to hold a bowling fundraiser on Friday, May 29 at the Saratoga Strike Zone Bowling Alley. “Strike Zone was wonderful,” said Jones. “They reserved all 28 lanes, handled wristbands and more. And the students worked so hard. The Senior Class Officers and Student Council all tweeted the event – it was a real grassroots activity. Kids are pulled a hundred different directions this time of year with finals and everything, but they all came out and we raised over $3,000.”
Liz Berry, a senior in Klapp’s Participation in Government class taught by Jones, said “When you grow up in the same school for all these years, you become friends, especially now, knowing we are all about to go our separate ways. It’ll be strange not seeing each other all the time. I really enjoy his service dog Patriot, and we all got closer. I wanted to make sure this bowling fundraiser was a success because I saw how important this was to Jordon, and you know how it feels when it’s important to you, especially if it makes your life a thousand times better, so I understood and made it a priority.”
“Liz was a big help,” said Jones. “There every step of the way. We couldn’t have done it without her.”
And the funds kept coming. “That same night, several people from my past showed up,” said Klapp’s mother, “having seen the event on Facebook. I was once a camp counselor, and someone who knew me from back then donated $1,000 out of the blue.”
The local teacher’s union donated $1,500. The Saratoga Springs Blue Streaks Robotic Team pitched in. And, the morning of the event, Klapp’s mother received a phone call from Stacie Arpey, president and director of the board of the Local Egg Foundation. The board had voted and agreed to donate up to $20,000 in a matching grant toward the robotic arm for Klapp.
“Given the amount of obstacles in his way,” said Arpey, “and his determination to succeed, he is truly an inspiration. He’s an amazing kid and we were happy to do this.”
The Local Egg Foundation is dedicated to providing tools for success for young people, typically 18 or 19 years old, who are falling through the cracks in Saratoga County. Working with local schools and other agencies, they provide funding for everything from backpacks to robotic arms.
“I can’t tell you how much this means to us,” said Holbrook-Klapp. “He’s a good-natured kid, doesn’t complain ever. Even at times when he’s not feeling well, he still works his hardest to get his work done. I know he deserves this arm but when so many people and the whole school community have really come to our rescue, Jordon and I just believe, honest to God, that it could happen and we have to try.”
So far, Klapp’s family has received close to $9,000, and with the new matching grant, that becomes $18,000 toward the $53,000 goal. To find out more or donate, please visit http://www.reachyourpotential.org/jordan/.