‘Never Give Up’ Gets Me Through Anything - The Ericka Sutton Story

Photo of Ericka
Photo of Ericka

Ericka Sutton was born in New Jersey almost 32 years ago and it appeared as though she was a healthy baby. “Nothing seemed out of the ordinary except my mother noticed that one of my eyes seemed unstable when I would drink from my bottle,” Ericka explained in a recent interview. “However, when I began to integrate into day care and other situations with children my age, there was an obvious difference with my development.” Ericka’s teachers would explain to her mother that although Ericka was trying to walk, she was unsuccessful and was not developing physically as other children her age were.

“Doctors would tell my mother that she was being neurotic and over protective,” Ericka said. But Noreen Sutton did not give up until she found some answers.” After seeing several doctors with no definitive diagnosis, Ericka, now 4 years old, was examined by a doctor who reassured her mother that he would do everything in his power to find out what was going on. After a biopsy the young child was diagnosed with Charcot-Marie Tooth (CMT) disease. A typical feature of this disease is weakness of the foot and lower leg muscles, which may result in foot drop and a high-stepped gait with frequent tripping or falls.

Ericka explained that at this time during the late 1980s CMT was considered somewhat rare, especially in females. “It is a genetic disease and the symptoms had been present since birth. After the biopsy we were certain about what we were up against.” Ericka believes she worked her way through all the medical aids available at the time including bars on her shoes and leg braces.

When she began public school in her home state of New Jersey, Ericka faced a significant challenge. “I’ve always been free willed. ‘Independent’ is the story of my life. When I started school I learned that life was going to be a fight and not everyone was going to be on board.” At one point in her early education, Ericka was placed in a special education class because of her physical disabilities and perceived mental challenges. “My mother tried to have me moved out of special education, but the school was not responsive. Because of that situation and because the winter weather in New Jersey was really hard on me, we moved to Georgia.” When Ericka enrolled in school in Georgia she tested four grade levels above the level of work she had been given in her previous school situation. “We were aware that I didn’t need special education. That’s when I realized that I would always have to advocate for myself.”

Beginning at a young age and with the strong encouragement of her mother, Ericka has always believed she could do whatever she wanted. This attitude was especially obvious when Ericka attended MDA (Muscular Dystrophy Association) summer camps for children with disabilities. “When a person has a disability they grow up ten times faster than others their age,” Ericka said. “You are exposed to things that most people your age don’t face. I could think and I could tell, but I couldn’t always do. I loved summer camp! The emphasis was always on abilities, not disabilities.”

The experiences at MDA summer camp continue to impact Ericka in many ways. “I am still good friends with people I met at camp,” Ericka said. “And in the camp environment I learned the importance of support and someone to push you to try harder or try something different.” A camp experience with power soccer more than ten years ago introduced Ericka to the sport and in a short time she was managing a team. Ericka traveled to Mesa, Az., to assist with the creation of the sports governing body U.S. Power Soccer Association (USPSA). She was secretary of the organization for five years while also serving on the board of directors. “Power soccer is the first competitive team sport developed specifically for power wheelchair users,” Ericka said. “I have also established a local team, Royalty Power Soccer.”

Ericka provides a supportive role in the lives of others with disabilities through the work of her foundation, Emosah Foundation. “My mission with the foundation is to empower others with disabilities. Not everyone has a support system. I have some extremely important people in my life who have helped me get to where I am today. My primary support system has always been my mother, and she's just what I needed.”

Ericka has begun an initiative she calls “Project Empower” with plans to sponsor a three-day weekend retreat for adults with disabilities. With her usual optimism Ericka said, “This hasn’t happened yet, but it will. Funding is a challenge!” However, while pursuing this significant goal, Emosah Foundation is active with other ways of helping individuals with disabilities. “We work very hard to secure sponsorships because we depend on donors to be able to organize events. During the holiday season, we give back to the community. Whether it is through helping a family with food and gifts, or hosting a very special event that focuses on the positives of an individual with a disability, our goal is to give back,” Ericka said. “For three years now we have participated in the Barnes & Noble gift wrapping for charity event at Christmas. Proceeds from this event help us with funding for foundation projects.”

An ongoing project of Emosah Foundation is sponsoring group outings some for adults and children, and others for adults only. “This gives individuals and families who are living with disabilities a place to go – an alternative to being at home. These outings include movies, swimming and winter socials,” Ericka said. “I also like to work with high school students with disabilities. Sometimes it takes someone outside of the family to strongly encourage them to move forward.” This is when the essence of Emosah Foundation can make a difference. “Education is very important to me, as I have a master’s degree in education, a bachelor’s degree in management and an associate degree in social work. College is not for everyone, but I strongly believe you have to do something to be productive in society,” Ericka said. “Even volunteering with local organizations is absolutely amazing! You have to be productive and give back to the community. It is important to show that you are not just a statistic. My goal is to be the best I can be so the next person can see the possibilities are endless for them to be the best they can be!”

From her personal experiences of moving many times because her living space could not be adapted to her needs, Ericka realizes the great demand for appropriate living accommodations for people with disabilities. A housing development to meet these needs is another of her dreams, as well as Ericka’s dream of being a mother and having a family. “I want to work and enjoy every aspect of my life.”

While moving towards these personal goals, Ericka continues to develop pathways and funding for Emosah Foundation. She also maintains a commitment to reach out to others with disabilities, emphatically stating, “Even if you are sitting, stand up for what you believe in!”

Ericka may be reached at ericka@emosahfoundation.org.

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