The Down Syndrome Association of Central Oklahoma


The Sister Story: Having a family member with Down syndrome brings opportunities for love, compassion, learning


by Heather Warlick Published by September 22,, 2015

Editor's note: Kerstin Soell was born with Down syndrome. This weekend, she will have a team amassed to participate in the annual Down Syndrome Festival & 5k in Bricktown. Kerstin's sister Adielene is one of her biggest supporters. Adielene, age 11 and in the sixth grade at the time, wrote the following essay about her sister last year.

I'm going to tell you a story about my 8-year-old sister, Kerstin. Kerstin was born on July 8, 2006. She was born with a disability known as Down syndrome. Of course when she was born, I was only 3 years old, and I didn't know what Down syndrome was until I was older. When Kerstin was 3 months old she had her first surgery; heart surgery.              

What is Down syndrome? Well, it is a genetic disorder, which causes a third copy of the 21st chromosome. There are two types of Down syndrome, Mosaic and Trisomy 21. Both types have learning difficulties and other medical complications.

Kerstin was born with Trisomy 21, which means every cell in her body has an extra 21st chromosome. Kerstin has a friend, Drew, who is 10. Drew has Mosaic Down syndrome. Some children with Mosaic Down syndrome do not have as many of the health issues as those with Trisomy 21, because not every cell has an extra chromosome. 

All people with Down syndrome have some noticeable physical features such as slanted eyes, flat neck, stubby fingers and toes, shorter arms and legs, and a straight line across the hand, where the hand folds. They also are slower learners than others. Many are obese because they don't know when to stop eating.

What is scary are the health problems many kids with Down syndrome face. Having the extra 21st chromosome causes severe medical problems that are very serious and dangerous. The good news is that medical treatments are improving substantially. Today, many people with Down syndrome survive over the age of 50. Though many children born with Down syndrome have a lot of health issues, some with Down syndrome can be just as healthy as a normal kid. 

How does Down syndrome change families? Some parents think they are having a normal child, but as soon as their child is born, the doctors notice that something is wrong. So they run a karyotype test which maps out your genes. The parents may be devastated because they wanted a normal child, but they are thankful that they have a special child and that God gave them a child.

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