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Down syndrome: Disability or bonus material?

Contributed by: Sarah Hartway on 8/25/2006

Twenty-five years ago, when new parents were told their baby had Down syndrome, they were also usually given a very bleak picture of their child's future. In the Denver area, parents of children with Down syndrome had nowhere to turn to learn more or to connect with others for support. Fortunately, some wise parents recognized the need to connect with others and formed a group of parents of children with Down syndrome. This group became the Mile High Down Syndrome Association. Together, these parents began learning more, teaching others and advocating for people with Down syndrome.

Ten years ago my son, Adam was born and we were told that he has Down syndrome. Our doctor knew of the Mile High Down Syndrome Association (MHDSA) and he offered to call them on our behalf. We requested this and before we ever left the hospital, we had the opportunity to meet with another family that had a toddler with Down syndrome. They taught us that Down syndrome is a set of characteristics common to people who have an extra copy of chromosome 21. While this extra genetic material seems to cause some health and learning challenges, we like to think of it as bonus material. They also brought us a packet of information and a book, answered our questions, told us of their experiences, and showed us that our son's life could still be wonderful and that raising him could bring us all the joy that comes from raising any child.

Our family began to attend MHDSA support groups and educational programs. We participated in social events and more. MHDSA and Adam taught us that Down syndrome is a part of who he is but that it doesn't define him. MHDSA helped us to see the potential he has and to focus on his abilities, not his disability. It helped us learn to teach others about Down syndrome and to help the community recognize the contributions of people with Down syndrome.

Today, Adam is a 4th grader who swims, takes tae kwon do lessons, enjoys pestering his brother and sister, and has a wicked sense of humor.

Because of the amazing help and support our family received and continues to receive from MHDSA, my husband and I, as well as our extended family have happily volunteered our support to MHDSA for years. Now I am a staff member of MHDSA and I am able to share what I've learned about Down syndrome with health care providers throughout the region. MHDSA continues to provide education, resources and support in order to achieve our mission of assuring inclusion and enhancing independence of people with Down syndrome. Please consider the Mile High Down Syndrome Association for a nonprofit grant to help ensure that this important work can continue.


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Showing 1-10 of 16 comments
Submitted By: Kelly Krei
posted on 9/10/2006 @ 8:17:47 PM
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It has been an honor and a pleasure for me to serve MHDSA as a board member for the past nine years. When our twin boys were born 11+ years ago, the best thing that happened to us was that we were introduced to Mile High. The fact that our sons have Down syndrome has benefited our lives because of the people we know through Mile High and for the people we have become thanks to our sons and Mile High. Great article Sarah, thank you. Sincerely Kelly
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Submitted By: Lucy McCown
posted on 9/2/2006 @ 10:56:23 AM
Rated Story
Sarah and her family are just one example of what makes MHDSA such a strong organization and a genuine asset to the community: passion and commitment. MHDSA's unrelenting efforts to assure inclusion and to enhance independence of those with Down syndrome have helped countless families locally and even nationally. MHDSA's advocacy programs and fundraising efforts serve as models of efficiency and effectiveness that can be - and surely have been - replicated by associations around the country. Thank you, Sarah, for all you do on behalf of MHDSA so that individuals with Down syndrome can live life to its fullest. Lucy McCown Austin, Texas
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Submitted By: Todd Lowther
posted on 8/31/2006 @ 9:20:38 AM
Rated Story
When my daughter Hannah [I'm different...I want a small wedding] was born 30 years ago, our pediatrician mentioned "mongoloid," "institution" and handed us a book to borrow. So, yes, thanks Mile High Down Syndrome Association; just sorry you didn't exist back that far.
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Submitted By: Kathy Treants
posted on 8/31/2006 @ 8:40:28 AM
Rated Story
The MHDSA is near and dear to our family. Although we no longer live in the area, it is still a group that my family looks to in time of question. Our daughter is the reason we felt it was so necessary to help get a group going to support parents who were just beginning to face the new challenges & needed to see the "bonus" of that extra chromosome. Great story, Sarah! MHDSA keep up the wonderful work!
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Submitted By: Susan Denny
posted on 8/31/2006 @ 7:22:54 AM
(Not Rated)
Dear Sarah, What a wonderful way to endorse MHDSA! MY sister, Ann Egan, who is 50 years old with Down Syndrome and ageing issues, has also benefitted from MHDSA. My other sister and mother went to group support meetings on ageing issues and were pointed in the right direction on seeking assistance, as Ann is outliving her caregivers. We are also impressed with the workshops offered on behavior, sensory integrative issues and new research. I have had time to do a little volunteer work with MHDSA and am also inspired by the upbeat attitudes of everyone there! Sincerely, Susan A. Denny
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Submitted By: Heather Cordova
posted on 8/30/2006 @ 8:27:23 PM
(Not Rated)
Thank you for sharing your story. MHDSA is a very wonderful organization and they were there for our family in the begining. I needed them to help start our journey. Thank You Heather Cordva
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Submitted By: kyle uniss
posted on 8/30/2006 @ 4:52:39 PM
Rated Story
This organization has been a tremendous support for us. Our daughter Katy will be two in September and MHDSA has been there for us every step of the way. So many families I know have been helped by this organization; it is worthwhile and necessary.
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Submitted By: Leah Nixon
posted on 8/30/2006 @ 3:04:36 PM
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This is a very worth while organization. One deserving and in need of financial help. These kids are worth every penny! Our son Gabe is now 9. September's Buddy Walk will be our 9th!!
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Submitted By: Andy Holdgate
posted on 8/30/2006 @ 2:25:20 PM
(Not Rated)
Thanks very much for sharing your thoughts about the Mile High Down Syndrome Association, Sarah. And congratulations Mile High on your 25th Anniversary! Thanks to volunteers and staff member like you, MHDSA has been a great service to my family and to the Mile High Down Syndrome Community. Andy Holdgate
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Submitted By: Cara Traganos-Mann
posted on 8/28/2006 @ 3:01:03 PM
Rated Story
The Mile High Down Syndrome Association is an amazing organization. They have helped so many familes through support groups, information and activities. My cousin has Down Syndrome and her parents are a huge part in starting the organization. Jamie is one month older than me so we have grown up together. Now that we are 25, I look back and say "WOW", look at all she has accomplished. Jamie and her family are a huge part of the Mile High Down Syndrome Association and will continue to ensure that familes and individuals with Down Syndrome are given the same opportunities as everyone else. Down Syndrome to some people is a disability. I haven't seen it stop one person yet from succeeding! MHDSA is the backbone to many families. Its amazing to see the success. I enjoy volunteering for MHDSA and Buddy Walk, it is so rewarding to work with the most amazing group of individuals and familes.
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Showing 1-10 of 16 comments
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CONTRIBUTOR INFORMATION

Sarah Hartway

Littleton , CO

Sarah Hartway has posted 1 story and 1 comment since joining on 5/26/2006. Sarah Hartway 's average story rating is 5.
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