Samuel McKoy-Johnson
Source: FOX 43, Jossie Carbonare / June 1, 2018
Taking big steps and beating the odds.
18-year old Samuel Mckoy-Johnson suffers from Osteogenesis Imperfecta, also known as brittle bone disease, making his bones easy to break and confining him to a wheelchair. But this June — he did something remarkable.
Johnson was able to take steps across the stage to receive his high school diploma at Spring Grove Area High School in York County.
“I’ve been through a lot of stuff, a lot of operations, a lot of surgeries, but you know, through it all I made it, I’m here, and I get to walk across the stage,” said Samuel McKoy-Johnson.
From walking hallways — to standing minutes at a time to build his endurance— Johnson has spent the last year going to physical therapy— twice a week — to prepare for the big day. “I knew that’s what I wanted to do and I wasn’t going to let anything stop me,” added McKoy-Johnson. His therapist, Stacy Fisher says she’s seen a lot of grit and determination to get him where he is today.
“Seeing him right after school, seeing him on the good days after school, on the bad days after school and that he still pulls it out, does what he needs to do with therapy, even though he may not have had the best day,” said Fisher.
“It’s amazing to see the transformation from where we started to right after he had surgery to where we are now it’s just amazing and is a true testament to his good hard work,” added Fisher.
Giving the ultimate life-lesson to each person he crosses paths with: to keep fighting, pushing and never give up. “He always says mom, I am ok, I am not going to sit around and feel sorry for myself so I am very proud of him, very proud,” said Tasha McKoy, mother.
His next steps? He’s headed off to college at Harrisburg Area Community College “The same work ethic I put in to be able to walk across this stage is the same work ethic I’m going to put in throughout life,” added Johnson.
So to anyone facing a challenge:
“Where there is life there is hope, and if there is will, there is always a way,” said Johnson. “Don’t let anything stop you, always stay true to yourself, stay focused, have self confidence and you can accomplish anything,” he added.
Barb Smith of Hooversville, PA
This month, we would like to introduce you to our participant Barbara Smith from Hooversville, PA. Barb lives with Cerebral Palsy and is one of the most talked about and loved participants around the Johnstown office. When Barb enters the room, you know it. With her silly jokes and enjoyable personality – you are sure to be laughing when she’s around.
When Barb is not cracking jokes, she is most likely playing her computer games, taking pictures, or dancing! It is also rumored that she is one to beat at Monopoly and is very creative with plastic canvas crafts.
Barb lives at home with her Mom, Dad, her older sister Mary, and 2 cats (Max and Crazy Tail.) She has another older sister, Lisa, that she enjoys visiting whenever possible. Barb enjoys going to the Truck Shows and being a part of the community around her. This year, Barb and her family decided to join AUCP for our Highmark Walk that was held downtown Johnstown. It was such an enjoyable time having Barb and her family join us, they made the day even better!
There are so many good things that can be said about Barb, she is truly an amazing individual. All of us here at Alleghenies United Cerebral Palsy are blessed to have her as one of our participants and more importantly, part of our family.
Michelle Gelles of Johnstown, PA
Michelle Gelles of Johnstown, PA, is our featured participant this month and we are eager to share her story with you.
Growing up, Michelle had a normal life. She was surrounded by a loving and supporting family that never treated her any different and her Cerebral Palsy was not something that held her back from doing the things she wanted to do. Michelle was mainstreamed in school and it wasn’t until high school that she had started realizing how her disability made her different than others and the bullying began. To this day, Michelle is not bitter about the way she was treated, instead her perspective is that people just don’t know how to interact with people who are different, therefore, her and her friends tended to be the brunt of their mean comments and actions. Fortunately, Michelle had the support of her family and close friends to fall back on.
After high school, Michelle knew that she wanted to go to college. Even though Cerebral Palsy makes it difficult to do many day-to-day tasks, she decided to enroll in college at Edinboro University which meant living in a college dorm away from her family for the first time. This brought several trials and new experiences that made her realize she needed help that she was not able to get from the resources on campus. After some time, Michelle had decided that it would be best to move back home and attend a local college where she would be able to commute back and forth. Michelle graduated with her Bachelors in Secondary Education and a Minor in Communications holding a 4.0 GPA at the University of Pittsburgh at Johnstown. Just a few years later, Michelle would commute to Indiana University of Pennsylvania everyday with another student to complete her Masters in Adult Communication.
Michelle works as an Instructional Designer to write and created coursework for online classes. She has held part-time and full-time jobs, working with local and online companies. Michelle has been able to experience the socialization aspect of the full-time workplace, where she was able to go out to eat with them for lunch or go out after work for drinks and karaoke. Because Michelle’s CP causes her to type and write at a slower pace which requires her to work and think twice as hard and it takes a toll on her body, she now works part-time from home for the Southern New Hampshire University creating coursework for online Business classes.
Every dream that Michelle has held and opportunity she has been given, she has taken it. Due to her determination, desire to learn, and supportive family, Michelle has been able to live a full life and achieve her life goals. When Michelle needed an accessible vehicle and an adaptive bathtub, she saved the money to purchase them. Like all the things that Michelle has, she has worked hard for them and she’s asked for help when she needed it. Michelle has taken her blessings and difficulties for what they were and learned how to adapt to them.
In sharing Michelle’s story with you, our hope is to inspire you to take each opportunity you are given and use it to the best of your ability. No matter your situation, you are able to achieve your dreams, don’t let them slip by.
“It can be scary [to try new things], but it is even worse to deny your opportunities than to take them.”
– Michelle Gelles
Michelle Hess of Pittsburgh, PA
What really makes a person decide to keep fighting after so many battles and statistics tell you that you will not make it? What makes you get up day after day knowing that most of the doctors you have faced told you that you probably would not live long or achieve much in life? For Michelle Hess, it is giving 150% every day because for some reason she was given a second chance and she believes that it is through God only that she is here today.
A hospital bed, operating room, and doctors are not unfamiliar to Michele. At birth she was rushed to a hospital across town with only minutes to spare because her intestines were outside of her body, the doctors only given years to live. At the age of 27, she faced death again when an aneurysm ruptured in her right ear. From the time that the event happened to the hospital she was brought back to life three times and was left paralyzed on her right side. After over a month in a coma, 4 brain surgeries, and with part of her right frontal lobe removed, she came back stronger than ever and ready to fight the battle.
The list of all the medical miracles Michele has been through would leave you even more amazed, if you can believe it. The most astonishing fact is that she has not let the difficult recovery take control of her life. Today, Michele is in her forties and lives each day looking for anybody that needs to hear her story. To hear of the battles that she faced and how the guidance and provisions of God in her life has allowed her to fight through the list of medical battles she’s faced.
With her eagerness to show kindness and her ability to inspire others with her story, Michele’s life dream is to travel and to tell the world of the story that she was given and how it has not left her devastated, but rather given her the will to “fight tooth and nail to regain what was lost.”
We are so inspired by the story that Michele so happily shares with us and we consider ourselves blessed to be able to be her Service Coordination Agency. It is because of stories like Michele’s that Alleghenies United Cerebral Palsy continues to provide the support our participants need to live a life of independence.
Deb Hockenberry of Altoona, PA
This month our featured participant is Deb Hockenberry from Altoona, PA. For 30 years, Deb’s doctors had diagnosed her with Multiple Sclerosis (MS), however, after not having many answers they found out that is was a misdiagnosis for Spinocerebella Ataxia (SCA). Spinocerebella is a slowly progressive incoordination of gait and is often associated with poor coordination of hands, speech, and eye movements. SCA is often confused with MS but is even more uncommon and is yet to have a cure. The biggest struggle Deb faces is the judgement of others. To most, her diagnosis is invisible, she looks healthy and can do many things on her own, however, behind her smile and strength is the pain that she feels daily due to her condition.
Getting the chance to talk with Deb, you quickly see her determination and edge. In fact, she recently released her first-ever children’s book, “Where Can We Have the Party?” The topic of her book was something that she has thought about for years, she would read books as a child and wonder why there were not many about talking animals going to a party. So, she decided she would write the book herself. Once she began, she learned that it was not as simple as she thought. You must learn the correct grammar and punctuation that is used to write children’s books. She took classes online and reached out to publishers and businesses to get her book published and sold. The book is illustrated by her friend, Emily Dimov-Gottshall, with watercolor paint. Deb even designed the layout of the book on her own using an online site and the illustrations from Emily. Finally, after years of putting in hard work and waiting, she is now a children’s book author.
On May 12th, 2018, Deb will be presenting and selling her book at the first-ever Altoona Book Festival. During this event, a dance group will choreograph the reading of her book. If you’re in the area and available that day, be sure to stop by the Altoona Library to meet and talk to Deb to learn about her love for Harry Potter and her cat, Harry (yes, after the Potter).
A piece of advice Deb would like to share to our readers is to “Never give up. If there’s something you want to do, you’ll do it.” There’s no limit when you have your heart set on something. Disabled or not, chase after your dreams and never give up. Deb is an intelligent and loving woman, she sought after her dreams and accomplished them. You can too. As her Service Coordination Agency, we are so thrilled at the achievements that she’s reached so far and are excited to see what the future has in store for her.
If you would like to order a copy of “Where Can We Have the Party?” you can find it on Amazon.com. You can also visit her Facebook page at www.facebook.com/AuthorDebHockenberry to learn more about Deb and find out where her next appearances are and information about her future books!
Matthew Dickun of Mount Washington, PA
Matthew Dickun is a 28 year-old, self-taught artist from Mount Washington, PA. Matthew lives with duchenne muscular dystrophy, but in no way does he allow it to define him.
Dickun graduated from Pittsburgh Technical College (PTC) with an Associates Degree in Science for Computer Aided Drafting in 2011. His education taught him how to use 3D software for designing mechanical parts. This gave him a solid base from which to learn 3D modeling in a more artistic way.
Matthew also enjoys creating artwork with colored-pencils, markers, and graphite pencil. He focuses on drawing subjects from science fiction and fantasy genres and had dabbled in other various traditional are genres.
After graduating from PTC he had an internship with Siemens where he learned that a desk job just wasn’t for him and decided not to go back after the internship ended. Art was something that he has done and enjoyed since he was young and he decided he wanted to make a career of it and began a website on ArtBalanced.com to showcase and sell his work.
You can find one of his featured art pieces here or go to his website at www.artbalanced.com/matthew-dickuns-gallery/ to see more of his work and even make a purchase to support his career in art.
