World Down Syndrome Awareness Day - Ayala's Story

Ayala was born healthy and strong, after a typical pregnancy with the usual battery of prenatal testing recommended for a 33 year old mother-to-be. Several days later, a nurse stopped by our room and said the following words, forever emblazoned in our minds:  “I would be remiss if I didn’t mention that the shape of her eyes makes me think of Down syndrome.” 

Neither of us had ever talked to a person with Ds, and her diagnosis shattered the life we’d envisioned for our first child. We found ourselves on a rollercoaster ride of emotions. As we navigated the typical sleepless nights and breastfeeding schedules of new parenthood, Ayala also carried us along another parallel journey filled with feeding and physical therapists, child development experts, and her 6 hour open heart surgery (a success!). Even more transformational was the community of advocates, parents and other children with Ds, who encouraged us to envision a hopeful future.

Fast forward to today: Ayala is an exuberant four year old with a witty sense of humor and abundant empathy. She gets excited every morning to go to preschool, and loves reading, dance parties with her little brother Arlo, and eating pancakes. Down syndrome is a part of her; but it's just one part of her multifaceted identity. Sometimes, she has to work harder than her typically developing peers to reach milestones, such as walking or talking, and we celebrate her accomplishments knowing her victories are hard-won. Being a parent of a child with different abilities has inherent challenges and we never want to sugarcoat it: some days are certainly rockier than others. And yet, because of Ayala, we are infinitely more connected, present and joyful.

 

On World Down Syndrome Day, please join us in celebrating Ayala and others by:

  • Hiring people with disabilities
  • Talking about difference with the children in your lives
  • Spreading the word to your family, friends and social media followers: Inclusion benefits everyone!
  • Using “person first” language, such as “A person with Down syndrome”

    World Down Syndrome Day is held on 3/21 to represent the 3 copies of the 21st chromosome. Because socks are shaped like chromosomes, wearing funky socks on 3/21 has become a celebration of World Down Syndrome Day.

    Down Syndrome Achieves is a research advocacy group that envisions a future when Down syndrome comes without health complications. When people with Down syndrome can maximize their potential and lead healthier, more active, and independent lives. That is why we developed the DSA Biobank. Located at Cincinnati Children’s Hospital Medical Center, the DSA Biobank is the first of its kind to catalog, store, and openly share biosamples and associated health data for study. Your support allows us to provide researchers with the critical biosamples needed to develop breakthrough treatments and therapies.

    To Learn more about Down Syndrome Achieves: https://dsachieves.org/

    More info about World Down Syndrome Day: https://www.ds-int.org/world-down-syndrome-day