The average person doesn't think much about the self-sufficient ability that comes with two perfectly functioning arms, but for Maddy Workman, she thinks about it daily.
So much so, that her quest for a $40,000 robotic arm just might be able to give her the independence she has been seeking for her entire life.
19-year-old Maddy was diagnosed with quadriplegia cerebral palsy - a disorder that affects muscle movement - in her infancy which severely obstructed her ability to perform basic movements such as using her hands to pick up a fallen object or walking to the refrigerator to grab something to eat.
As a woman with aspirations to study architectural engineering technology so she can design accessible homes and buildings for everyone, Maddy created a GoFundMe page to raise funds for the JACO arm and is now also seeking the help of The Wooly Pub and as an extension, the community.
“It's just so exciting because I know it can give me more independence,” says Maddy.
“I appreciate and I value my independence so much that I don't want to always need to have people come in and help me.”
General manager of The Wooly Pub Katherine White says Maddy had approached her about starting a fundraiser after which the restaurant began actively promoting her GoFundMe page for the JACO arm.
“When we met Maddy, she's just so infectious- her personality, her positivity- we love her,” says White.
“We definitely wanted to help with the GoFundMe for sure. We got that out.”
White says the Neighborhood Group of Companies had a platform to reach people with the same charitable mindset as them that could enormously benefit this cause so they organized a community fundraiser on Aug. 24 from 11 a.m. to 2 p.m. at The Wooly Pub where representatives of JACO will be present to demonstrate the use of the arm.
While the government has funded for a portion of mobility devices for Maddy, the JACO arm is not funded because it is not considered a necessity says Maddy’s mother, Danielle Workman.
“Her condition is not considered rehabilitative, so that's part of the funding and how they justify what they spend money on,” says Danielle.
Danielle says Maddy has always had an independent personality who unfortunately spent her teenage years in and out of hospitals.
She says as a newborn, Maddy lost her oxygen supply during her delivery and spent 30 to 40 minutes without oxygen.
“We were told for three days she would not survive because she has brain damage and if she survives she would be a vegetable. That's a quote. And obviously that's not the case,” says Danielle.
“She had extensive brain damage as well as organ damage and massive internal bleeding. She bled out before she was 12 hours old. She was determined to be here. Literally despite all of the doctors who’ve said ‘we don't know how she's still here like we don't have a medical explanation.’”
She says as a result of cerebral palsy, one of Maddy’s hips did not develop properly so, at the age of 14, she had a dislocated hip. After hip surgery, she ended up in a full-body cast and when the cast came off, she was in worse pain than before the surgery.
Daniele says after three years in and out of hospitals, Maddy’s hip was replaced at the age of 17.
“Since the experience, it really changed my perspective on my ability and made me appreciate my ability and my independence way more than I ever have,” says Maddy.
Danielle says when she saw the video of a woman using the JACO arm do all the things that she does for Maddy such as open the fridge, take milk out and pour cereal, she knew it would change Maddy’s life for the better after all the challenges she has faced.
“She doesn't need an attendant, but she needs the ability to be able to do that,” says Danielle.
“She was like this would basically be everything that I need because she is so reliant on people to do so many little things that we take for granted. The use of this is limitless when she has it and learns how to use it.”
Danielle says her concerns heightened when she visited Mohawk College in Hamilton to view the residence building Maddy will be living in for her first year in college starting in September 2019.
It left her wondering who will do the basic things for Maddy that she does for her such as picking up a fallen object?
Danielle hopes that the community will be able to raise the funds for her daughter’s arm just in time for college.
“There are so many things I do for her all the time,” says Danielle.
“Personally I will feel a lot better knowing that she has the ability to actually truly take care of herself.”
