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!
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
“Let’s get this over with,” I whispered to my husband, as we sauntered into the room where we would be taking, what we affectionately referred to as "the old moms’ ultrasound.” It’s that special scan they do on the pregnant bellies of women ages 35 or over- just to be sure everything is "normal."
I quietly observed as the tech rechecked my baby’s femur measurements- over and over again. I questioned her, to which she responded that those bones were a bit short, but it was nothing to worry about since the numbers were proportionate to those of the baby’s head. But the look on her face said otherwise. But during our meeting with the high risk physician following the ultrasound, the femur bone measurement was never mentioned.
My instincts must have kicked in because I had the urge to research further, and learned that short femurs were soft markers for a baby potentially having Down syndrome. Could it be? If so, how would I manage to take care of her? How could I possibly be ready for such an undertaking? Should I test to get a pre-birth diagnosis?
After some soul searching, I realized I wanted to know. Not because I would terminate the pregnancy (as some might assume, and others might even suggest), but because I needed time to process the information- to go through the stages of grief, and to realize that it was possible that the baby girl I imagined in my head all those months (years if I am being honest), didn’t really exist. I requested to be screened through a blood test called Panorama (a non-invasive procedure that would estimate my chances of having a baby with Down syndrome). This would not lead to a solid diagnosis, but it would give me a clearer understanding of what to expect. And that is what I did. A few weeks later I received the call that informed us that our baby had a 91% chance of being born with this chromosomal defect that would change all our lives.
As fate would have it, babies with Down syndrome are often born with additional defects such as bowel obstructions or congenital heart disease- so we tested for both. While our daughter’s bowels were fine, her heart was another story. Zahra had a large hole in the center of her heart that 100% needed open heart surgery by six months old if we wanted her to live past her first year.
When we heard this news, my husband sobbed. “She doesn’t deserve this. She’s just a tiny baby,” he cried. I sat silently at first. I looked around the room of medical professionals and for some reason I began to feel reassured by their compassion and expertise. I took a full, deep breath, squeezed my husband’s hand and declared, “We’ve got this.”
Zahra Zoë Shodja (aka ZeeZee) was born in December 2016, and by that time we had endured a spectrum of emotions knowing our baby would be born with a health condition. So on the day she was born we were able to celebrate her birth, and her life just like we would have any other baby!
If you would have asked my husband or me our thoughts back then, we would have told you our child was going to be perfectly healthy. I mean, something like Down syndrome (or any other abnormality) certainly wouldn't happen to us. But it did. And you know what else? Our daughter is so beautiful. Life hasn't been a cake walk.
We witnessed her tiny body struggle to remain nourished for the first few months of her life, due to her heart defect. We handed our 4 month old baby over to a team of surgeons (people we didn't know) who held her fate in their hands. Then we watched her recover as her scars healed in time.
Now she is over 18 months old and today we watch her laugh and play like other kids her age. We see her smile through obstacles, we see the gears turning when she learns new skills and see receive the most beautiful smiles when she is proud of herself for her accomplishments. We are blessed to watch a person so small reach for goals with such determination that it inspires us to reassess our own goals and find new fire inside to achieve them. And what's more, is we get to feel unconditional love from this human who trusts us to be her parents and root for her every single day.
Things haven't been easy for Zahra, and her presence has changed our life story. We don't know everything there is to know about AVSD or Down syndrome, but we learn as we go. Zee is a priceless gift that we were afraid of at first, and appreciate now. Every moment of this journey has been worth it!
So if someone ever tells you that they are having a baby with an extra chromosome, please don't say to them, "I am sorry," for there is nothing to be sorry about. Perhaps instead, exclaim, "Congratulations!" That would be most appropriate.
- Vona Shodja