By Heather Clower
The Parsons Advocate
Chances are well all know someone with Down syndrome, which makes sense with it being the number one chromosomal disorder in the nation. According to the Centers for Disease Control and Prevention, approximately one in every seven hundred babies born in the U.S. is born with the extra 21 chromosome, totaling about six thousand babies per year being born with Down syndrome.
What exactly is Down syndrome? Most people know its outward appearance, but several do not understand the genealogical make up of the condition. In a human without Down syndrome, while in the uterus the fetus receives twenty three pair of chromosomes, half from each parent. In a child with Down syndrome, they receive a partial or full extra copy of chromosome 21. On the exterior, individuals with Down syndrome typically are smaller in stature, have low muscle tone, upward slanted eyes, and a single deep crease along the palm of the hand. Possessing this extra chromosome also increases the risk of developing additional conditions, such as congenital heart defects, respiratory and hearing problems, Alzheimers disease, and thyroid conditions. Of course, this is not always the case, though studies have found cohesion between Down syndrome and these other medical conditions.
Local parents of three, Andrew and Heather Kisamore, were happy to share their story about their special little boy Jace. H. Kisamore recalled, “The whole pregnancy went well until my thirty seven week ultrasound and the tech got up and said she would be back. At that moment we knew something was wrong. She came back with my doctor on the phone and the doctor said there was something wrong and he needed to see me Monday morning”. She continued, “We went in on December 12, 2016 and the doctor said the baby isn’t growing and Jace’s belly was only measuring twenty eight weeks and we needed to get him out”. H. Kisamore was admitted yet they still had no clue what to expect once their son was born. “Three hours later he was here weighing five pounds three ounces. As soon as they laid him on my chest, they said your beautiful baby boy has Down syndrome. I was terrified and didn’t understand”.
Jace was transferred by ambulance to Ruby Memorial Hospital in Morgantown where they performed an echocardiogram to investigate a heart murmur heard previously. “Come to find out, Jace had two small holes in his heart and his ducts had yet to close”, H. Kisamore stated. Fortunately little Jace was discharged without needing immediate surgery, however it is possible for him to need a heart surgery by the age of three.
As mentioned above, there are common physical characteristics one associates with Down syndrome, however this varies from each individual. “Jace doesn’t have all the Down syndrome features; his fingers aren’t short and neither are his legs. He’s got the slanted eyes and a flat nasal bridge, but he’s only delayed in speech and walking”, H. Kisamore exclaimed. “He has an amazing Birth to Three team that works with him”, she added. Jace has therapy on a weekly basis with a team of five therapists working with him. Birth to Three has been helping the Kisamore family since Jace was only two weeks old. “Andrew and I have goals and high expectations for Jace and I honestly feel like any special needs parent has to feel that way to push their kids and know their kids can do anything!” H. Kisamore stated smiling.
Kim Lipscomb, special education director within Tucker County schools, explained how the teachers address working with children with all special needs students once they reach school age. The WV Department of Education has precise and clearly written processes and procedures within school code in regards to working with all students with special needs as well as their families. “Tucker County Schools’ is beyond blessed to have a strong collaborating relationship with both the Parents as Teachers program and WV Birth to Three Program for referrals for any child suspected of having special needs as they approach the school age, which begins at the age of three”, Lipscomb explained. “Tucker County Schools and the Special Education Department is also very blessed with a staff that is certified and highly qualified in the area(s) that they work in”, Lipscomb proudly added. It is evident that all of the staff are very passionate not only their jobs, but the students they serve as individuals. “Their dedication and love for the children out in the schools are what makes the difference in our program”, Lipscomb added.
Just recently, Andrew and Heather Kisamore along with their son Jace attended an event in Clarksburg known as the Buddy Walk to raise Down syndrome awareness. “They had therapy dogs there, horse rides for therapy, face painting for the kids, and a little butterfly tent the kids could walk through. They gave out books for the kids and had a fire fighter there to meet the kids and take them for a ride in the fire truck”, H. Kisamore reflected. “My main reason for attending is I was really determined for Andrew and I to meet other parents that have gone through what we have, and wanted to make new friends and have Jace meet kids that he could become good pals with”, she said.
Obviously with time, research, and education, more ways have been discovered to assist individuals with Down syndrome be able to attend school, find a job, and contribute to society in many wonderful ways. As the NDSS says, quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives.