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!
“What mattered most of all was the dash between those years.
For that dash represents all the time they spent alive on earth and now only those who loved them know what that little line is worth.” ~ Linda Ellis
We had always heard that the most important part of the lifeline was the dash between the day you are born into this world and the day that you leave to go to Heaven. While we understood the meaning of it, the depth of the saying hit home when Zoi gained her angel wings. To us and many others, Zoi’s dash contains remarkable achievements that have and will always take our breath away.
She overcame many struggles that would take a grown person out. The pure strength and determination of our Zoi B has always had us in awe of her. When she was told she couldn’t do something by critics, like most of the young children with Down syndrome or other types of special needs, she proved them wrong. She fought to work past the stereotypical standards that children with disabilities face every day.
Some of the few we have heard: “Oh, I’m so surprised she doesn’t have a feeding tube like most children with her type of medical issues”. No sir. Zoi Allona was a foodie for sure, enjoying mussels, bread, spaghetti, pizza, and many more foods. “She has low muscle tone. She might not sit, stand, or walk without support”. Well, let me tell you what. She worked extra hard and with the help of her little sister showing her how it was done, she sat unsupported. She was working on standing also. “She had two strokes. I don’t give her long until she passes away. A few months maybe. Hospice it is”. Wrong again. She lost movement on both sides of her body due to not one, but two strokes. Our big girl pushed through it and lived her life to the fullest for 2.5 more years. She regained all of her movement and as mentioned begin sitting up by herself!!
She made us (her parents) better people. She made her siblings compassionate and loving, especially when it comes to those who are different than them. This is important because instead of following the crowd and looking past someone who might not be the same as them, they will be the ones to start a conversation, play, and make friends. They will be advocates, not only for Zoi, but for your children. They will be able to teach acceptance and awareness. Zoi also touched our family that we hadn’t spoken to in a long while and made us communicate. She brought us together. She made doctors who had been through years and years of medical school get their books back out. She brought teams together in the hospital that haven’t worked together before. They were brought together by a medically complicated little cookie…but in the end, she showed them that the intercommunication was possible and needed. She opened doorways to others that may come after her. “I had a patient before named Zoi that had similar issues…”
Even though some of you may never have met her, we are sure you have heard of her, just like we know most of your children’s names. Zoi Allona Patterson is our hero. She never let her problems get the best of her. She was a sassy hambone. Even up until the last moment, she fought. She fought to be well. She fought to be happy. She fought to be herself. In the end, even though she wanted to keep fighting, her body was tired. It was time for her to rest. And for everything she ever did (fuss, laugh, cause chaos, etc.), we are so very proud of her.
We want to tell you thank you for your support throughout and after her life. Thank you for being a part of it all. Not only that but thank you for sharing your little (or big) ones with us. We are forever family.
-Heather Patterson, Zoi’s Mom
IN LOVING MEMORY OF ZOI PATTERSON
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