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Syndrome Spotlight: Down Syndrome

Syndrome Spotlight: Down Syndrome

Dr. Laura Cifra-Bean, a general pediatrician, Medical Outreach Director for the Down Syndrome Association of Northeast Ohio, and mother of a child with Down Syndrome recently shared her experience and why Down Syndrome Awareness is important.

What is Down Syndrome and what are the common features?


“Down syndrome is a genetic condition that's caused when there's an extra copy, either an extra full copy or a partial copy of the 21st chromosome. It leads to some common features, including some physical findings that a doctor might find on a newborn exam.”

Common features:

  • Slant to the eyes
  • Single crease or curved pinky
  • Lower muscle tone
  • Heart problems
  • Intestinal problems
  • Mental developmental issues

“People with Down Syndrome also typically have many strengths, including very good social skills. They tend to make friends easily and love easily. They have great visual memories and recall and are typically wonderful people to be around."

What is it like to be a Mom of a child with Down syndrome?  


“Parenting all three of my children has been the best experience of my life. I think with my son, who has Down syndrome, the challenges occur more frequently, but also the triumphs are all the sweeter for having overcome the issues. I think we've become resilient and the issues that have gone away have led us to be stronger and to know how to deal things in the future.”

“It's led us to be a very close family. Chris has two siblings. His younger sister is an occupational therapist at the Mayo Clinic, and his younger brother is a second-year medical student. And you find that in a lot of families with Down Syndrome the siblings go into help being professions, teaching therapy, medical care.”

Is there anything you would say to encourage others who may have recently found out that they will have a child with Down syndrome?

“I would say congratulations on the birth of your child and then I would tell them that I understand what they're going through. There's a lot of fear at first. There's a big learning curve, but it does get easier over time and there is a big community of people with Down Syndrome and their families out there to help you. It's all going to get better, and your child is going know you, love you, and be a very valued member of your family.”

What does Down syndrome Awareness Month mean to you and why is it important to raise awareness?


“Down Syndrome Awareness Month is a lovely time to let the whole world know about the lives of people with Down syndrome. It's changed a lot over time. In the 50s and 60s a lot of people with Down syndrome, the average lifespan was about 10 years, and now the lifespan is about 60 years.

One of the reasons the lifespan has increased so much was because of better medical care, open heart surgery, better education, better inclusion, and all of those things come about because of awareness about Down Syndrome and the rich lives that people with Down Syndrome live. People with Down Syndrome have more opportunities in school, in work, in life, in the community. Also, the community benefits from knowing  people with Down Syndrome and learning more about including them.”


What are ways that people can honor Down syndrome Awareness Month?

“Everywhere across Ohio, there are multiple Down Syndrome associations. Anywhere you are, search out your Down Syndrome Association, follow them on social media, share their posts, donate to them, go to their events, and talk to your kids about it.


Is there anything else that you would really want people to know about Down Syndrome?

“I would say to families and healthcare professionals, therapists, everyone that there is so much guidance now about how to care for people with Down Syndrome. The American Academy of Pediatrics just released their new health supervision guidelines for children and adolescents.


The Global Down Syndrome Foundation has adult health care guidelines, and these can all be found on the web. For the parents and families out there download the guidelines, take them with you to your healthcare provider. For the medical providers, please seek out the guidelines and familiarize yourself with them so that the people with Down Syndrome in your care can get the best care possible. To families that might be receiving information. Please reach out to your local Down Syndrome Association because we can give you information, we can find experts. There are many, many resources to support people with Down Syndrome now and your local Down Syndrome Association can certainly help you with those things.”

Dr. Cifra-Bean’s son Chris shared with DODD about living with Down Syndrome.

Is there anything else that you want to tell people about living with Down syndrome? 

“I've been doing everything that I really wanted to do. I did that Football League that had people with Down Syndrome. Well, my life is pretty much normal. I've been doing a whole bunch of stuff. I've been doing school. I was included in a whole bunch of classes that I did. I was in orchestra at Mentor High and that was really good. I'm actually writing a book too.”

“I've been happy all my life. I just turned 30. People with disabilities are fantastic. I've been in an improv group. And they all have Down syndrome, even me. I wanted to know that they are the best and that they can do almost anything.”

 

Learn more about Down Syndrome and get resources from an organization near you. This list is being shared by DODD for informational purposes and are not being promoted or endorsed. 

The Upside of Downs of Northeast Ohio

https://www.theupsideofdowns.org/

Buddy Up

https://buddyupforlife.org/

Down Syndrome Association of Central Ohio

http://dsaco.net

Down Syndrome Association of the Valley

https://www.dsav.org/

Miami Valley Down Syndrome Association

https://www.mvdsa.org/

Down Syndrome Association of Greater Cincinnati

https://www.dsagc.com/

Down Syndrome Association of Greater Toledo

https://www.dsagt.org/

Down Syndrome Support Network of Stark County

https://dssnstark.org/

Ohio Valley Down Syndrome Support Group

https://ovdssg.com/

Stand Up for Downs

https://www.standupfordowns.org/

Gigi's Playhouse - Cleveland

https://gigisplayhouse.org/cleveland

 

Gigi's Playhouse - Canton

https://gigisplayhouse.org/canton

 

Awakening Angels

https://www.awakeningangels.org/