World Down Syndrome Day & A TRULY Special Delivery

Down Syndrome Association of Central Florida

The kind folks at Truly Nolen of Orlando recently introduced us to a very talented teenager named Faith-Christina who loves quilting. “I have been making quilts and other sewing crafts for almost two years.  I decided that I wanted to sell them to people online and also raise awareness of people like me,” says Faith-Christina on her website, www.imperfectcreations.net.

Quilting Master Faith-Christina Duncan shares her love with Down Syndrome Association of Central Florida

Quilting Master Faith-Christina Duncan shared her love with DSACF by making them a one-of-a-kind quilt!

“People who are told they can never do anything just because of a ‘handicap.’ When people tell me that I can’t do something because I’m different, because I have a disability, I look at them and tell them not to dis my ability. I can do the same things you can. I just like to do them my own way,” she says. (Shhh! A little Buddy told us we may see more awesome quilts from Faith-Christina pop up around town! Maybe at the Best Buddies Friendship Walk at Lake Eola on May 7th?)

Her dad, Mike Duncan, works at Truly Nolen as a Trainer for their Eastern Region. Faith-Christina, Mike, and mom Nancy have been have been involved with the Down Syndrome Association of Central Florida since 2005. Why? Well, for one, DSACF is a wonderful organization who has served over 1,000 families and 12,000 friends and supporters in the Central Florida community for the last 25 years. Also, Faith-Christina was born in 2000 with Trisomy 21, also known as Down syndrome.

DSACF is the proud host of the Florida State Down Syndrome Conference, a free medical clinic in partnership with Arnold Palmer Hospital’s Developmental Center, free family fun days at Universal Studios and SeaWorld, free IEP support and educational evaluations from the Down Syndrome Center (Jacksonville) and much more. 

According to their website, “Truly Nolen of America partners with and supports many nonprofit organizations in the various local communities we serve across the country. We encourage our employees to participate in local events and we support them and their families. We send our kid and family favorite mouse car limo as well as our world famous antiques to events when possible.” And boy did they! Seriously, check out their Community Express truck. It’s a food truck and entertainment party on wheels!

Amy Van Bergen is DSACF’s current Executive Director, and will be retiring this month. Amy will pass her torch to longtime volunteer Interim Executive Director Ed DeAguilera. To celebrate Amy’s years of dedication, advocacy and service to this wonderful organization, Mike and Truly Nolen commissioned Faith-Christina make a special quilt and handmade receiving blankets which were presented to a very surprised Amy!

Truly Nolen Community Express

Here comes the Truly Nolen Community Express!

Mike and the Truly Nolen team took this surprise even further. A fleet of Truly Nolen mousecars left the Orlando office, led by their Community Express Truck, drove in parade formation down I-4 to Down Syndrome of Central Florida’s office on Wymore Road in Winter Park, set up a truly wonderful picnic, and made Amy and her entire DSACF team lunch! (Want a TRULY rad mouse motorcade or party in your community?  Fill out and submit this form when seeking a request, donation or pledge.)

Truly Nolen DSACF

The Truly Nolen Community Express sets up a picnic lunch!

Which brings us to March 21st. To most people, this was simply another Monday. To others, March 21st is when a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.

Why the 21st? According to Down Syndrome International, “The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

On 19 December 2011, the United Nations General Assembly declared 21 March as World Down Syndrome Day (A/RES/66/149). Global activities and events around WDSD each year, organised by persons with Down syndrome, their families, friends and advocates, work to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

In doing research for this post, Top 5 readers Mary and Phil Daikos from New York shared with us their son Evan’s story; how Mary first felt about his diagnosis of Down syndrome, and how she feels now. We’d love for you to read it and smile.

As many of you know, we were blindsided by the diagnosis of Down syndrome when Evan was 10 months old. To say we were shocked and uncertain as to what that meant for us would be an understatement. But I have a crystal clear memory of being upset about a week post-diagnosis and looking down and seeing Evan staring up at me as if to say, “What’s wrong, Mom?” That was my a-ha moment. Because, to him, nothing was wrong. Nothing had changed! Nothing.Has.Changed.

Fast forward nearly 5 years… “Down syndrome” has very little effect on our daily lives. I only really think about it when advocating for him, or when dealing with prejudgements based on his diagnosis. To us and those who know him, he’s just smart, silly, funny, crazy Evan. He has the kindest heart, is the best listener, and the biggest helper ever. Today, after school, he told me I was his “best friend”. He is my heart.

So thankful for him and every one of his beautiful chromosomes. Happy World Down Syndrome Day💙”

5 year old Evan Daikos just started Kindergarten and LOVES ice cream!

5 year old Evan Daikos just started Kindergarten and LOVES ice cream!

Upcoming DSACF events: