March 21, 2022
Today, we stand in support with World Down syndrome Day (3/21) and their #RockYourSocks campaign, to advocate for the rights, inclusion and well being of people with Down syndrome.
According to worlddownsyndromeday.org, "Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socioeconomic lines in approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues."
We sat down with Disaster Tech's VP of Client Success, Michael Colanti, to discuss his experience raising a daughter with Down syndrome and the spread of misinformation regarding a Down syndrome diagnosis.
Can you tell us a little about your journey with your daughter's Down syndrome diagnosis?
My wife and I were told that our baby had markers for Down syndrome about 8 weeks into the pregnancy. This was the result of a pre-natal genetic screening, which has become more and more common in recent years. This screening can identify the sex of the baby, as well as certain other common chromosomal markers. Trisomy-21, which is the third copy of the 21st chromosome, represents the marker for Down syndrome. Unfortunately, the news was shared with us in a very negative light. We were informed that Mae would not live a quality life, and we should consider terminating the pregnancy. The challenge of implicit bias by medical professionals was compounded by the lack of updated resources that were available related to Down syndrome. Thankfully, my wife and I were able to connect with organizations and resources that helped us through our journey, but we learned that this is something that is common across many types of diagnoses.
How has the outdated information regarding Down syndrome affected your journey?
We live in Boston, which could arguably be considered the medical capital of the world. Sadly, even in this environment, we faced challenges receiving medical guidance that was non-biased, updated and accurate information, related to Down syndrome. Medical practitioners, of course, carry their own life experiences and perceptions, and many of those were outdated as it related to individuals born with Down syndrome and the types of lives they can lead. For example when I was born in 1982, the average life expectancy of someone with Down syndrome was 25 years. Now, with advances in medicine and social support systems, it is around 60 years. Without updated and accurate data and resources, it is hard to make truly informed decisions, as it does for anything in life. As Mae's clinical doctor at Massachusetts General Hospital likes to say, "there has never been a better time to be born with Down syndrome."
How do you think is the best way for others to educate themselves on more current information regarding Down syndrome?
I think it is important to highlight that Down syndrome is just one type of disability that exists within society, which highlights the need for social acceptance and support services for everyone. Yes, Mae has Down syndrome, and yes, we spend a majority of our time advocating within that sphere. But, we also work within Mae's school and the disability community to advocate on behalf of anyone with a cognitive or physical disability. There is a saying that the disability community is one that any of us can join in any moment due to accident, injury, or anything else could happen. For Down syndrome, and for genetic disorders generally, even just talking to someone who has a disability, or their family members, can have a huge impact. Within the medical community, my wife, Cristina, who is a Physician Assistant, now teaches seminars to doctors, nurses, and medical students within Boston on how to better understand genetic screening tests and how to communicate results to patients. There is no bias, and the goal is to simply give people access to updated, accurate information so they can be better educated, and provide better care to their patients.
What does World Down syndrome Day mean to you and your family?
It represents an opportunity to reach out within our communities and social networks to help not only raise awareness about Down syndrome, but celebrate the lives of people like Mae. In a time where the words "Diversity", "Equity", and "Inclusion" are at the forefront of society and the workplace, I think it is important to highlight those with disabilities, and the values and contributions they make within our society. Celebrating diversity and being more mindful & intentional about inclusion within our daily lives can help make us all better and happier as individuals and communities.
What is one thing you want the world to know about people with Down syndrome?
That no one "suffers" from Down syndrome. It is simply a part of who my daughter is. Does it come with certain unique challenges in terms of development and growth? Of course. We have faced numerous health related challenges with Mae early in her life, which can at times accompany Down syndrome, but in a way, that is no different than all of us at varying points in our lives. Individuals with Down syndrome not only lead happy lives, but large studies have shown that family members and siblings of those with Down syndrome experience greater feeling of happiness and levels of empathy. Our older daughter, Maia, age 9, is proof of this study. Even knowing just this one thing, can help others view Down syndrome in perhaps a new light.
Join Disaster Tech in World Down syndrome Day's campaign #RockYourSocks, by wearing mismatching fun socks! Post a photo of your mismatching socks, and tag us in it along with the hashtag "#RockYourSocks"!
About Disaster Tech
Disaster Tech, a veteran-owned public benefit company, offers data science and decision science technologies for situational awareness, operational coordination, and risk management before, during, and after disasters. Disaster Tech’s goal is to save lives, protect the environment, and build resilient communities by providing the most sophisticated, advanced analytics and distributed high-performance computing platform on the planet. Find more at https://www.disastertech.com/
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