Our baby was born with 3 copies of Chromosome 21 -
…and we had a lot to learn about what that meant.
This is for World Down Syndrome Day, 3/21
And, Knightly, this is for you.
(courtesy of National Down Syndrome Society)
The most common genetic condition, there are over 400,000 people in the US with Down Syndrome (or DS). 1 out of every 691 babies are born with DS.
down syndrome causes
Only 1% is hereditary. The other 99% is still a mystery to science. No toxin, food, environment or exposure has been found as the cause. While the only known factor is that it increases with age, the truth is that actually over 80% of babies with DS are born to women under 35.
We are a case in point.
27 yrs old. No family history. Healthy pregnancy.
the history of down syndrome
In the 1800s, Dr. John Down first published on Down Syndrome (hence the name Down Syndrome.)
And, check this out! This is a photo of Dr. Down’s daughter and grandson.
(photo courtesy of Global Down Syndrome Foundation)
History has been horrible to people with DS.
In just the last century (1900s), people with DS were institutionalized, untreated when needed, and purposely infected for medical experiments. Most died in infancy. Those who lived long enough were forced to be sterilized in 70% of the states in the US (according to News Medical).
As of 1983, life expectancy was only up to age 25.
Today, just 30 years later, people with Down Syndrome live on average to age 60.
so what is down syndrome exactly
It means someone was born with an extra copy of chromosome 21. 3 copies in total (hence 3/21, March 21 as World Down Syndrome Day).
So what does that mean?
There is an increased risk for congenital heart defects, respiratory, vision/hearing problems, Alzheimer’s, leukemia, thyroid issues, to name a few. But, like with any child, they are risks, not guarantees.
While many of Knightly’s baby friends have faced much more serious issues with long hospital stays and surgeries. MANY and most of these conditions are now treatable and most people with DS lead healthy lives. His friends have been absolutely inspiring and are recovering so well. We’ve heard parents dub the scars from the surgeries are “badges of honor” for their children.
So far, Knightly has had no heart, hearing, breathing or thyroid issues. The only thing that’s shown up so far is astigmatism (but honestly that was kind of a given since David and I both have astigmatism and all my siblings have worn glasses since early childhood).
Physical and cognitive delays can range from person to person from mild to moderate to severe. But with the leaps made in the past 30 years, the delays are not indicative of the strengths, talents and future people with DS, as with any person, possess.
In short, we love how one nurse put it:
“An extra chromosome? It just means more to love!”
down syndrome myths + truths
So let’s debunk some myths and share some truths of Down Syndrome today.
At this moment, there are people with DS who can and who have
(click links for real life examples)
Been able to drive
And, you know what, one of the biggest myths we’ve been told over and over again (and let’s be honest here)
People with Down Syndrome are not innocent angels
They are human
Complete with meltdowns, stubborn streaks, attitude, PERSONALITY!
Truly, wonderfully human
…just like you and me.
And just like you and me, people with Down Syndrome are found in every background, every nation, every race, every income, every color of the rainbow
exceptions to the rule
OK, yes, it may be just a percentage of people with DS that have been able to accomplish what we just showed above.
But what’s the percentage of people you know who choose to overcome their odds, not use their physical limitations as an excuse but as a stepping stone, actually use their talents, pursue their dreams, fight for what they want, and truly live life -
Life to its fullest
Life that touches hearts, changes lives
Life that inspires
We have faith that, by God’s grace, our baby boy, people with Down Syndrome, and many others with “special needs”, will, in the next 30 years (just as in the last 30)…
…make possible what was once impossible.
to you the reader
If people with Down Syndrome and special needs can now do what everyone else thought was impossible, here’s a great thing,
so can you.
to all the contributors
THANK YOU, thank you to the amazing people that contributed for our World Down Syndrome Day shoot!
- Host | Intervention Center for Early Childhood
- Babies | Chloe, Edna Jean, John, Zoe, Camilla, Isabella, Connor, Bianca, Cole, Izzy, Michael, Knightly, James, David, and their amazing parents!
- Baby Car | Mercedes Benz
- Bridal + Groom Outfit Styling | Hope Stanley of Mary Me Bridal
- Bridal Veil | Petit Plume
- Groom’s Suit | Friar Tux
- Bride’s Gown | Macy’s
- Bridal Bouquet | Trader Joe’s
- Coffee Cup | Starbucks
- Hollywood Star Tux | Baby Jett Setters
- Hollywood Star Oscar | Bargain The People
- Hollywood Star Shoes | Payless
- Tantrum Baby Diaper | BumGenius 4.0 Cloth Diaper
- Rainbow Baby Diaper Covers | Carters
- Orange Rainbow Baby Floral Headband | Children’s Place
- Yellow Rainbow Baby Bowtie Headband | The Knitting BOWtique
- Blue Rainbow Baby Bow Tie | Moa Boutique
for more on our story
where to get help
If you or a loved one wants more info or help for someone with DS (or really any special need), these resources are AWESOME. There is a community (PLENTY of communities) out there waiting to help:
- Regional Center of Orange County (but there is one in any community so find your local regional center via Google)
- National Down Syndrome Society
how to give back
Please help – share, educate, inspire, pass it on.
We’re so thankful for ambassadors, for heroes, like you.
You can also give, even just $1, to the awesome, awesome people at ICEC who help provide therapies, encouragement and support for families with special needs. Give back here.