It is a chromosomal disorder caused by the presence of an extra 21st chromosome. It is named after John Langdon Down, a British physician who described the syndrome in 1866.
But this definition is missing so much!
The definition above completely misses the mark in showing how Down syndrome can make your life better, richer, fuller, and pack it full with love. Down syndrome can bring you closer to the most beautiful, giving people in the world – people you wouldn’t have otherwise met. Down syndrome allows you to learn the joy of truly unconditional love for your child. Down syndrome teaches you that in something that brought you such pain, such as with the diagnosis of your child, such beauty and intense love can grow.
This is what Down syndrome really is. For the second year, our family is joining forces with another local family for the Down Syndrome Awareness Walk on Sunday, September 27. Because Down syndrome brings you closer to others, it is only right we walk with another family together as one team.
Down syndrome also is about struggles. Like the struggle of seeing your child develop at a different rate than typical peers. The challenge of possible complications in health. The challenge of advocating for your child to get the services they need. And, perhaps the biggest challenge, the challenge of discrimination, such as limited access to services, use of the r-word, jokes, and other invalidations or insensitivities.
This walk is important for many reasons. It helps us raise money for families and individuals with Down syndrome. This walk brings awareness to others of the beauty, love, and togetherness of Down syndrome. And this walk supports those of us on this journey of such highs and lows in our lives. Last year our team was huge in numbers, full of love and raised $4,150.00. We are proud of the photo of our 2008 team. It was beautiful to see the love and support we received from our families, friends, previous students, colleagues, and members of our church. We also received so many words of encouragement for the walk and the importance of this encouragement was priceless. Please help us this year by doing something. Some ideas: Join our team, start your own team, donate to the awareness walk, spread the word about our walk, pray for us, help others see that the r-word hurts others (don’t just let it pass someone’s lips without saying something), spend time with someone with Down syndrome, share our story – and the list can go on and on. Just please do something! We will forever be grateful.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.