October is Down Syndrome Awareness Month!
Hi Oneida! I am Stephanie Burke, School Counselor at Otto Shortell Middle School. For those of you who do not know, my daughter, Avery (who turned 1 in July), was diagnosed at birth with Down syndrome. Down syndrome is a congenital disorder arising from a chromosome defect. It arises from a defect involving chromosome 21, usually an extra copy (trisomy-21). There is a wide range of developmental delays and physical disabilities that can be caused from Down syndrome. Part of awareness is knowledge; here are some facts and information about Down syndrome:
- There are three different types of Down syndrome- Complete trisomy 21, Mosaic trisomy 21, and translocation trisomy 21
- People cannot have mild or severe Down syndrome. Either you have it or you don't. Ability, and many other things, is not dependent on the condition, but rather the individual.
- People with Down syndrome have an increased risk for certain medical conditions.
- The likelihood of having a baby with Down syndrome increases with maternal age, 1 in 700 babies in the United Stated are born with Down syndrome
- Children with Down syndrome go through all the same milestones as typically developing children; it just may take them a little longer to achieve some of those milestones.
- When expectant or new parents share that their baby has Down syndrome, do not say, "I'm sorry" or "Oh no" or anything along those lines. Although it may be well intended, it can be hurtful to the parents.
When Avery was first born, we were lost. We didn’t know what to think, or expect. We had a hard time sharing her diagnosis with people, even family and friends. We felt alone at times. It was once we started to share her diagnosis that we found the 21 Club of CNY. Our area is very lucky to have this club to support parents, families, and people with Down syndrome. They hold conferences, bring in informative speakers, hold amazing family events, and so much more. We have met many supports through this club and are lucky to have them in our lives. Usually in October, they hold the Buddy Walk, which is one of their biggest fundraisers. This year, due to COVID-19, we are unable to participate in our first Buddy Walk. Here at OSMS, along with the Jessica’s Heroes walk, we will also be walking for Down syndrome awareness. We will be walking on October 20th and 23rd for Down syndrome. We encourage virtual learners to walk at home, and all students to wear their blue and yellow on these days. We welcome any donations from parents and students. We encourage anyone to donate .21 cents or more that will be donated to The 21 Club of CNY. No amount is too small and is appreciated beyond words.
Thank you for taking the time to read a small part of our story, we hope that each of you have the chance to meet our girl. She has changed our lives for the better and our world is brighter because she is in it. Happy Down Syndrome Awareness Month!
