World Down Syndrome Day & How One Family’s Mission Brightens Futures
This March 21st marks the 10th year of a worldwide campaign to celebrate and advocate for people with Down syndrome (DS). World Down Syndrome Day always falls on the 21st day of the third month, a meaningful selection representing the third copy of the 21st chromosome, the characteristic possessed by all individuals with Down syndrome.
This year, World Down Syndrome Day will highlight the positive contributions that families make for their loved ones and others in the DS community. The theme, “‘My Opportunities, My Choices’ – Enjoying Full and Equal Rights and the Role of Families,” was appropriately chosen because 2015 is also the 21st anniversary of the International Year of the Family as declared by the United Nations.
One family from Austin, Texas particularly exemplifies this year’s focus. When Liz and Tim Plachta discovered in 2011 that their newborn daughter had Down syndrome, they decided the diagnosis was not going to change their high expectations for her to live a full life.
“[W]e vowed as a family to give her all the opportunities we could to learn, grow, flourish and become an important contributor to society and to the community,” write the couple on their website. Not only was Ruby born that day, but also the inspiration for their non-profit organization, Ruby’s Rainbow.
The mission of Ruby’s Rainbow is to provide scholarships to adults with Down syndrome who wish to continue learning after high school. Since they founded Ruby’s Rainbow in 2012, the Plachtas have raised over $120,000 and have financially supported 42 young people in their pursuit of higher learning. In 2014, they granted 18 college scholarships.
What’s more, Ruby’s Rainbow is sustained entirely by volunteers and sponsors who appreciate the high-spirited approach embodied in the organization’s tagline, “Rockin’ that extra chromosome!”
One awardee, Ali Hale, studies early childhood education at Western Carolina University (WCU) through its University Participant (UP) program, for instance, and works as a preschool teaching assistant. Hale was named Volunteer of the Year for her tutoring, and last fall was also chosen by the WCU student body to be Homecoming Queen.
“[W]e want to help these amazing individuals with Down syndrome reach their highest potential,” the Plachtas say. “It’s our goal to create awareness of [their] capabilities.”
For people with disabilities – just as with anyone else – opportunity begins as early as the time of development in utero. There, a mother extends her growing baby the opportunity to flourish. Unlike everyone else, however, this opportunity is tragically withheld from many unborn children with Down syndrome.
Mark Bradford, President of the Jerome Lejeune Foundation USA, explains in a paper for the Charlotte Lozier Institute that various statistics show between 61% and 93% of unborn babies diagnosed with Down syndrome are aborted in the United States.
To shed light on the specific reasons women give for their abortion decision after receiving a prenatal diagnosis of Down syndrome, Bradford cites a 2007 study from the Netherlands. Among the reasons cited:
- A belief the child would never be able to function independently (92%)
- Considerations that the abnormality was too severe (90%)
- The burden for the child himself of having Down syndrome would be too heavy (83%)
- Uncertainty about the consequences of Down syndrome were too great (78%)
- The burden for other children in the family would be too heavy (73%)
From this, it’s clear that any work that showcases the capabilities of people with Down syndrome, such as the work of the Plachta family, could actually save lives.
There’ve been many recent advances in medicine and research as well. Bradford observes that “[t]he accelerated pace of research in the last three to five years is a strong indication that therapeutic treatments may soon offer hope to those now living with Down syndrome and their caregivers.” (For a summary of advances in medicine and research, see here.)
Just as importantly, it’s been shown that individuals with Down syndrome are happy and loved. Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, found in his study that a whopping 99% of participants with Down syndrome reported being happy with their lives. Indeed, 99% of parents said they loved their child with Down syndrome, and 97% of brothers and sisters said they loved their sibling with Down syndrome.
To educate expectant parents, many states have passed legislation requiring healthcare providers to give up-to-date information on Down syndrome itself and community resources to parents receiving a prenatal diagnosis of Down syndrome.
If baby Ruby alone has inspired so much positive and lasting impact, imagine the endless possibilities if other children with Down syndrome were given an equal opportunity to live, be loved, thrive, and reach their highest potential.
For more information about Ruby’s Rainbow and their scholarship program, please visit: http://www.rubysrainbow.org/
Genevieve Plaster is a research assistant for the Charlotte Lozier Institute.