Inspiring Stories

Learn more about some of our favorite people in the Grand Strand by reading their stories below.  As you read you will quickly begin to understand why the people in our community who have Down Syndrome are so important- they truly add so much richness and depth to lives and of their friends, family and even strangers! 

 
 
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Behr

This is my son, Behr, who is my biggest inspiration in life. Since Behr was one and a half, he has had some major hurdles to overcome. He has been dealing with some GI issues, weight loss, and extreme emesis. After being hospitalized in November 2017, and having multiple tests performed trying to determine the cause of all of his GI issues, we were still at a loss. Every test came back normal. He was such a trooper throughout every test though, proving just how strong he is. At this point, we did not have an answer as to why he is having all of these symptoms.

Fast forward to January 1, 2018, the stomach bug strikes our household big-time. Behr is basically out of commission for an entire week with symptoms. He was so pitiful, weak, and just not himself. Then one week later he is scheduled for surgery to remove his tonsils and adenoids. His surgery comes and goes, and things are going well, other than him being in pain. However, the poor little guy is still extremely weak, and not wanting to play or move around. He was just not the same little boy, who has a lot of energy, and spunk.

In the midst of all of this, we finally see a doctor who has figured out why Behr has been losing weight, and having so many problems. He was diagnosed with rumination syndrome. He has a long way to go before overcoming this, but in time he will. I've discovered that patience is such an important trait to have when you have a child with special needs. I am hopeful that he will jump over this hurdle quickly.

One month after surgery, Behr finally got back his motivation! He has been working so hard on gaining his strength back. This may not seem like a big deal to most, but when you have a child with low muscle tone, and they have several set-backs, like Behr, it's a huge celebration when they can finally do the things again that they once were doing. Now, one month after surgery and sickness, he is back to his old self. He never gives up, even when I may be feeling discouraged and worried. Behr is such a strong boy, always showing us he will persevere. I can't wait to see how far he will go in life!

- Erica Klocker


Casey - L.I.F.E. SAVER

My son, Casey, has Down syndrome, and his path in life has taken some unexpected turns. Although he could have stayed in high school until age 21, my husband and I decided to let him walk after four years and move on into adulthood. We felt that he was ready for something different, but little did we know what that decision would mean.

For two years, without the structure and social contacts of school, we saw Casey lose skills, do less and less, and fall into a serious depression. We had to find something for him, but what? There was a waiting list of over 2000 people at DDSN. No help there. Voc Rehab accepted Casey as a client, but jobs were scarce, and it was hard to find the right fit. He worked two days at a fast food restaurant, a few weeks at a grocery store, and a few months at a movie theater. We were worried and sad and frustrated. Then came L.I.F.E.

L.I.F.E., Learning Is For Everyone, an on-campus college program for young adults with intellectual and developmental disabilities, began at Coastal Carolina University in 2009. Casey was part of CCU’s first L.I.F.E. class. At first, he was a little nervous, but within a few days, he couldn’t wait to get to campus. He was a day student his freshman year, lived in the dorm his sophomore and junior years, and senior year shared an off-campus apartment with two other L.I.F.E. students and a peer mentor. Some of his classes were designed especially for students in the program and others were regular Coastal classes. He and his classmates were immersed in campus life. Throughout his time as a CCU student, Casey was befriended and supported by professors and other students. He gained self-confidence, decision-making skills, a rock-solid work ethic, and an appreciation for a world of people and ideas. He tried new things and pushed boundaries. Like so many young people without a disability, he had the college experience and found himself.

And then what? Casey is now a CCU employee. An administrator at the university was so impressed by his presence around campus that he made sure there was a job available for him after graduation. Casey has been steadily employed by the university since 2013. He works for the Athletic Department as an assistant football equipment manager. He lives at home, has a girlfriend, an income, and a purpose. He was saved from isolation and loneliness by young people and educators who believe that everyone has value and that everyone has something important to contribute to the world. Casey was saved by L.I.F.E.

*For more information about the Coastal Carolina L.I.F.E. program, their web page is https://www.coastal.edu/biddlecenter/lifeprogram/. There are similar programs at Clemson University, the University of South Carolina, Winthrop University, and the College of Charleston.

- Nell Huffman

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