When parents learn their child has Down syndrome, too often they’re met with sad eyes, hushed tones, an “I’m sorry” and a list of possible health concerns. Outside the doctor’s office they may meet stigma and judgment. “Nothing Down,” a nonprofit that advocates for people with Down syndrome and their families, wants to change that. When a new mom or dad learns their baby has Down syndrome, Nothing Down wants them to have an optimistic view of their child’s future. To help make this happen, its co-founder, photographer Julie Willson, has been releasing photo series that show both the outer and inner beauty of people with Down syndrome. Her latest project, “Down Syndrome Is Beautiful,” features 21 people, ages 1 to 38, dressed in formal wear. The shoot took place on Feb. 20, but the photos are now being released to honor World Down Syndrome Day on March 21.

“When people see these pictures, we want them to see the same beauty that we are blessed to live amongst every day,” Willson told The Mighty in an email. “And although our participants all look gorgeous in their tuxedos and gowns, it is their inner beauty that we hope shines through.”

group of young men standing on staircase in tuxes
Group photo. Photo courtesy of Julie Willson / JuleD Photography
Photo courtesy of Julie Willson / JuleD Photography
Photo courtesy of Julie Willson / JuleD Photography
little boy in tux
Aiden. Photo courtesy of Julie Willson / JuleD Photography
little girl in pink dress
Alexa. Photo courtesy of Julie Willson / JuleD Photography

Willson first made headlines when she did a photo shoot in October, Down Syndrome Awareness Month. That series, featuring 11 young people with Down syndrome, was inspired by Willson’s late sister, Dina, who had Down syndrome. Dina passed away four years ago from heart failure. She was 35.

The incredible response to the portraits inspired her to release a video again featuring those families, where they each shared messages to new parents of children with Down syndrome. The video quickly went viral, prompting Willson to co-found Nothing Down with Shannon Daughtry, one of the mothers from the October photo shoot. Another mother from the shoot, Colleen McGuire, joined the board and is now the nonprofit’s secretary.

young man in tux on stairs
Arman. Photo courtesy of Julie Willson / JuleD Photography
another young man in tux on stairs
Brian. Photo courtesy of Julie Willson / JuleD Photography
little girl in blue dress
Carly. Photo courtesy of Julie Willson / JuleD Photography
young woman in blue dress on stairs
Christine. Photo courtesy of Julie Willson / JuleD Photography

Willson hopes Nothing Down will help educate and advocate for pregnant moms and new parents who are receiving their children’s diagnoses. Their main mission is to provide educational materials, including a DVD of their viral video, and a resource packet to doctor’s offices, hospitals and genetic counselors. In doing so, they hope to offer encouragement to parents.

“Expectant parents are too often shown a very pessimistic view of what their future might hold, with a concentration on all of the possible challenges. They are not told of the amazing blessings that they are about to receive or how their lives are about be forever changed for the better,” she told The Mighty. “We want to dispel many of the myths and stereotypes and show the world how beautiful and amazing individuals with Down syndrome are.”

young man in tux on stairs
David. Photo courtesy of Julie Willson / JuleD Photography
young man posing on stairs
David. Photo courtesy of Julie Willson / JuleD Photography
little girl in blue dress
Emma. Photo courtesy of Julie Willson / JuleD Photography
baby in tuxedo
Finn. Photo courtesy of Julie Willson / JuleD Photography
young women and men and kids in formal wear
Group photo. Photo courtesy of Julie Willson / JuleD Photography

This year marks the 11th anniversary of World Down Syndrome Day (WDSD). The date (March 21) is chosen for the trisomy of the 21st chromosome in people with Down syndrome. Each year, people are invited to join the “Lots of Socks” challenge on WDSD. The idea is to wear fun and wildly designed socks so people ask you about them and you can spread awareness.

“The reality for many is that prevailing negative attitudes result in low expectations, discrimination and exclusion, creating communities where children and adults with Down syndrome cannot integrate successfully with their peers,” the WDSD website reads. “But where children with Down syndrome and other disabilities are given opportunities to participate, all children benefit from this and environments of friendship, acceptance, respect for everyone and high expectations are created.”

View more of the “Down Syndrome Is Beautiful” series below, and visit Nothing Down for more information.

young woman in blue dress sitting
Kelly. Photo courtesy of Julie Willson / JuleD Photography
baby in blue dress
Kennedy. Photo courtesy of Julie Willson / JuleD Photography
little boy in tux
Michael. Photo courtesy of Julie Willson / JuleD Photography
little girl in pink dress
Olivia. Photo courtesy of Julie Willson / JuleD Photography
baby in pink dress
Raegan. Photo courtesy of Julie Willson / JuleD Photography
little boy in tux
Robbie. Photo courtesy of Julie Willson / JuleD Photography
young woman in pink dress
Simone. Photo courtesy of Julie Willson / JuleD Photography
young woman in pink dress sitting
Stephanie. Photo courtesy of Julie Willson / JuleD Photography
young woman and man standing on stairs
Steph and Brian. Photo courtesy of Julie Willson / JuleD Photography
little boy sitting in tux
Tristan. Photo courtesy of Julie Willson / JuleD Photography
young man with legs crossed in tux
Zach. Photo courtesy of Julie Willson / JuleD Photography
little boy in tux
Zach. Photo courtesy of Julie Willson / JuleD Photography

Venue: The Addison Park in Aberdeen, New Jersey; hair, makeup and nails by Gurlie Locks Salon in Matawan, New Jersey; tuxedos from Men’s Wearhouse; dresses from Pink Princess and Tesi Bridal

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I never feel as hard-pressed as a mom as I do on Tuesdays. It’s early morning preschool drop-off, back-to-back therapy sessions and one leftover hour to check something off the to-do list before pick-up. So off to Target I went this week with my exhausted 14-month-old in tow.

I pulled out all the stops. Peek-a-boo, tickle monster, letting him chew on something he shouldn’t have… None of it worked. That was until I was on my last aisle, the home stretch, when a woman stopped my red buggy in its tired tracks and started talking to Anderson.

Of course, the tears magically stopped and he turned on all of his charm. She looked at me and said, “I have a ‘special’ son, too.”

I’m sure she saw the stunned look on my face. I’ve brought up the fact that Anderson has Down syndrome to a few strangers before, but it’s never been the other way around.

She told me about all of the therapies she used to take her now 23-year-old son to, the advocacy group she joined — that I myself am now a part of. She talked about the busy-ness of her younger-mom life and looked at me and said, “I consider Down syndrome a gift.”

Now the tears were pouring down my face. Standing next to the bananas and avocados, we hugged as I choked out, “I agree.”

She told me how she treated her son the same — that he faced consequences when he got into trouble — echoing sentiments my husband and I share. She added, “I told everyone, we were climbing the same mountain, it was just going to take us longer to get there.”

Anderson danced the whole time. She told me she knew she was supposed to meet us that day. She called Anderson an angel.

Angel can be translated to “messenger.” On a Tuesday in Target, I feel I met one.

She delivered a message I needed to hear. In the stress of am I doing enough for him, in the uncertainty that lies ahead, she told me that I’m on the right track. I’m on the right track because I’m loving him. I’m loving him by trying. Trying to do what I believe is best for him. But also by loving all of him. Embracing the entire gift that is Anderson.

On a Tuesday in Target, I met an angel. Her name was Karen.

two women and young baby smiling
Jillian and her son, Anderson, with Karen.

Follow this journey on News Anchor to Homemaker.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Oh, you do know how to drag me out of the depths, young son.

Just yesterday I was briefly chucked back into that hateful Dark Place. The one I haven’t been in ages because it’s just been us and Life at the Speed of You and mostly smooth sailing. Our optimism and our “normal” run this show, but every once in awhile it hits me like that anvil falling on Wile E. Coyote’s head, and I’m shocked into submission. Nothing angers me more. There you sit, being the amazing kid you are and something threatens to dull your shine.

Not on my watch, buddy.

Like a whirlpool had grabbed my ankles, I got sucked into that place, the one where I’m still angry at outsiders who don’t show you optimism but instead rank you and rate you and chart you and place their societal limitations on you. I got there because every time I let my guard down their attitudes seep into my thinking. I cannot stop it because it always blindsides me.

And nothing angers me more.

I saw you unable to do something that chronologically by age, for all intents and purposes, you should be able to do. But you couldn’t do it. And I counted… well, I counted you. I gave you a number. Like a prisoner, a criminal behind bars, I mentally took your progress and your actuality from you and replaced them with a number. A “developmental age” number. Because that’s what happens when they come in. They break me.

Because as it’s always been, when it’s just you and me and your daddy, we are on the move. We progress, and we see what you can do and then we look for what’s next — only what’s next — not what’s on a chart, a book, a guide, a notepad. We identify what you can do now and choose what we should work on next. We stack it up, like a castle made of that wet sticky sand that endures. We make sure you’re ready for “next,” and when you are we know, and we do and we move.

But damn it if I didn’t let them in last night. I let them break me, and in retrospect I’m pretty seriously disgusted with myself. But mostly I’m sorry. Because I owe you more.

But here’s the rub — I’m not sure those people who skulk into my brain and yank away my pride in your achievements when I least expect it actually know the most important thing they should know, which is this: you are dealing with a child whose family has great hopes and dreams for him to soar. These are not rose-colored glasses we wear. We don’t care about your charts because this is our reality. Our son has the same right to huge expectations as does everyone else.

We don’t see or register your numbers, your rankings and ratings because we progress at the pace of our son. Still, we come to you to ensure he has support because the System says we should. But real support lifts. Real support elevates. Real support nurtures.

Real support does not break. And when I think of the “support” you people provide, I feel shards. I envision rickety ladders lashed together across a constantly moving icefall, in a landscape above meaningful oxygen. Your version of support suffocates. It threatens. Do better. You owe it to everyone you serve.

And get out of my head already.

When you rank and you subsume and you marginalize and you pity, you break us. Yet here, you will have seen that we don’t need you to break us because some days we actually are broken in spite of you. Without warning, we sometimes break ourselves and we have to rebuild again and again. Our lives behind closed doors. You don’t see, but I’ve just revealed it because it is everything.

Sometimes we break. Then we come to you once we’re strong again but you go and dismiss us with accusations of “rose-colored glasses” and “obstructive” and “in denial.” You wind up and swing your scythe of negativity and lop us off at the ankles every time.

We are already broken and broken and broken yet still glued back together. Don’t you realize this?

But wait.

Hang right on.

Here, in reality, in the day to day, like fractured bones, broken spirits heal. They heal when you pick up the pieces, and you compress all the fears, and the gargantuan efforts, and the extra support back into itself. Cast it in a bear hug and squeeze until the broken thing knits itself back together. Different, yes. Healed, yes. Weakened?

Not on your life.

Because once again — as it is always with our stellar boy — every time I get to the Dark Place, surrounded by that pile of shards that is my heart, he goes and blows my mind the very next day. It is pure magic — the empathy, the “knowing,” the joy by osmosis. The mom-and-her-son thing. I thought it would be amazing to have a son, but let me tell you, this is like that thought on a roller coaster. Screamy delight. Leave your stomach at the top of the hill because it’s going to be a big drop and a raucous ride.

Just gotta ride it. Let your throat dry up and your hair fly and ride baby, ride.

So to my best boy, wah hey, bang! out of the Dark Place we arose today, didn’t we, kid? You hoiked me back up with such a rapid succession of… well… success. A fearless unaided slide. Tons of walking and exploring on still wobbly legs, pointing the way ahead and demanding I follow. And I follow. Always, I follow.

Your sudden fearless engagement with zoo animals where last visit shouting and hesitant was the way forward. And the biggest surprise of the day that which was your first stress free endeavor on a “real” potty. This is parenthood. This is bliss. This parenthood has no label, no timeline. This is pride in progress.

author's son in red sweatshirt, smiling This is how you are indeed just the same as everyone else.

Unbroken.
Unchained.
Unsurprisingly you.

I’m entirely on the other side of that Dark Place and what put me there was you.

You. The iron in my veins that drives me forward, giving me strength.

You. The roaring lion, pride of my Pride.

You. My every tomorrow.

You.

When the bough breaks the cradle will fall, and down will come numbers.

Because you always stand tall.

Follow this journey on Down in Front.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


I sat in the cold, sterile NICU staring at my newborn baby. I’d just found out my daughter had Down syndrome, an atrioventricular heart defect and was in congestive heart failure. An open heart surgery was in my sweet baby’s future.

As a first-time mother at age 25, I was completely caught off-guard with these diagnoses. With Jaycee’s birth going nothing like I had planned, my mind struggled to process what was happening presently and what would happened in the future.

So many questions… about my life, Jaycee’s life and our family’s future. It was overwhelming knowing I had none of the answers. Only time would reveal them.

Ten years later, I have the knowledge I wanted while I held my infant daughter with a million questions running through my mind.

Will Jaycee survive the open heart surgery?

Yes. At 3 months old, the surgery will go without a major complication, but she will need oxygen for three months afterwards. Unfortunately, small leaks in her valves will result in another heart surgery when she is 2. Getting the news that a second heart surgery would be needed would be devastating for a period of time, but this won’t be the last heart issue she has.

When will I “get over” my child’s diagnosis?

The first year will be tough. Actually, it will be the toughest. Adjusting to her Down syndrome and heart problem while to trying to start Jaycee in therapy to address her developmental delays will just be the beginning. The first year will also include a failed hearing test, which later prompts tubes, and a referral for strabismus surgery when Jaycee’s eyes start turning in. Asthma will also become an issue before age 1.

You will be pushed to your emotional limits. Things you believe about God and faith will tested. While you sit and try to figure everything out, you realize it’s very easy to love Jaycee. Eventually, you understand there will be things throughout her life to “get over,” and that acceptance is a process, not a definitive moment.

Will I be able to add more children to our family?

Yes. You will have a son a few years later. He will be healthy and develop ‘typically’ (except for a few minor issues). Seeing him grow up and surpass Jaycee in some areas will be hard at times, but you quickly learn to view each child on their own life path. Jaycee and he will be great friends until we play too many “Frozen” songs in the van. Then, he will get annoyed.

Will my marriage suffer?

Jason and you have stayed together through everything. There have been stressful times without a doubt. Together, you have worked through them all. Date nights become increasingly hard. Most of the quality time is found after the kids go to bed, which is thankfully at 8. You both remain dedicated to the things you vowed to do. You never knew “for better and for worse” would mean
watching your daughter have several surgeries, be on a ventilator a couple of times for illnesses, and be in so many emergency health situations.

Will Jaycee be able to read?

Yes. In pre-school, Jaycee was memorizing sight words and reading them “aloud” through signing. Her ability to memorize is one of her strengths that you found early on. Currently, Jaycee is reading first grade material, which is pretty good considering she says less than 30 words. Her expressive vocabulary is hindered by severe childhood apraxia of speech, but she uses sign language and her speech generating communication device well. Sometimes, you are sad because your child can’t say much, but this eventually just becomes a fact and doesn’t feel like a loss.

Will I be caring for Jaycee forever?

Ten years into this journey, I can say that you are planning to be Jaycee’s caregiver long-term. Given her limited speech and daily medical interventions, Jaycee requires fairly intense supervision and care. Things could change, but realistically speaking, Jaycee will most likely never live independently.

But here’s the thing, it doesn’t bother you anymore. The thought of caring for her the rest of your life no longer overwhelms you. You love her. Whether she lives with you until she’s 18 or 45, you will help her as long as you can. She is your daughter and friend. Somewhere through the years the thought of caring for Jaycee forever changed from sadness to love.

There have been moments in Jaycee’s life when her future wasn’t guaranteed. These moments have taught you the value of appreciating each day with her and solidify one key thought:

Life is better with Jaycee.

mother holding baby in hospital

Follow this journey on A Special Purposed Life.


Ever year CoorDown, an Italian organization that advocates for people with Down syndrome, releases a World Down Syndrome Day (March 21) video. In this year’s (below), you see a montage of actress Olivia Wilde while another’s voice describes her hopes, dreams and challenges.

In the last few seconds, we realize that voice belongs to AnnaRose Rubright, a 19-year-old with Down syndrome. She asks, “How do you see me?”

Rubright is a full-time college student at Rowan College at Burlington County in Pemberton, New Jersey. She works part-time at Breakthru Physical Therapy and Fitness in Medford, New Jersey, and is a Special Olympics athlete.

*Sign up for our Down Syndrome Newsletter*

This World Down Syndrome Day, let’s make an effort to raise awareness and end stereotypes about Down syndrome. People like Rubright have the same aspirations and experience the same feelings as anyone else. They’re already contributing to society in important ways, so it’s time to put an end to preconceived notions.

To learn more about people with Down syndrome, you can check out these resources and organizations:

We also recommend a few of these bloggers in our Mighty community:

What do you think about the video above? Let us know in the comments below.


t shirt that says 'i survived a down syndrome, what's your superpower?' One mother has launched a Change.org petition to remove a shirt being sold on Teespring.com that reads “I Survived A Down Syndrome, What’s Your Superpower.”

“This shirt is extremely offensive. It is hate speech!” Dana Thomas, the petition’s creator, wrote. “Down syndrome is not anything to survive. It is a beautiful thing.”

Teespring.com is a “user-generated platform,” meaning anyone can design and sell a shirt on it.

“This t-shirt makes my blood boil,” Taylor wrote in her petition. “My baby is not something to ‘survive.’ I often [wonder] how I survived without her. Please help make awareness that this is not OK and should not be sold.”

Thomas, who has a 1-year-old daughter with Down syndrome, contacted TeeSpring about the shirt and says she received this response:

Thank you for providing me with that information and thank you for getting in touch and bringing this matter to our attention. We apologize to those who may be offended by content posted on Teespring.

Teespring is a user-generated platform where people from around the world create various designs to express their views, interests, and opinions on a number of different issues. We strive to maintain a platform for free expression, even in cases where we don’t condone or agree with the views and opinions expressed by our users.

For more information about Teespring’s policies and our content guidelines please visit: http://teespring.com/policies/acceptable-use

Despite this response, Teespring.com’s content guidelines say the company does not allow hate speech:

We do not allow campaigns that promote or glorify hatred toward people based on their age, race, ethnicity, national origin, gender, gender identity, sexual orientation, disability and religion, including people, organizations or symbols dedicated to hatred against these groups. Additionally, we will not allow campaigns including content that bullies, attacks or threatens specific individuals.

By Monday evening, Thomas’ petition had reached 983 signatures.

Teespring.com has not yet responded to The Mighty’s inquiry.

In October, when Sarah Risko was browsing a different user-generated T-shirt site, SunFrog Shirts, she came across a shirt that read “I freaking hate adults with disabilities.” Risko, who has four learning disabilities and fine/gross motor dysfunction from undergoing chemotherapy as a child, reached out to the company and demanded the shirt be removed. Eventually, she won. A SunFrog Shirts representative responded to The Mighty saying the shirt had been removed and apologizing for the incident.

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