Just weeks after her New York Fashion Week (NYFW) takeover, Madeline Stuart, the 18-year-old world-famous model with Down syndrome, looks absolutely radiant in a whimsical bridal shoot.

madeline stuart in wedding dress, veil blowing in the wind
Sarah Houston Photography | Photo courtesy of Rosanne Stuart

Stuart, from Brisbane, Australia, did her latest shoot at Rixey Manor, a popular wedding venue, in Culpeper, Virginia, with photographer Sarah Houston. She modeled a number of gowns, hair accessories and florals. “Not getting married,” Stuart wrote on Facebook. “Just a photo shoot lol.”

“[The shoot] was to break down barriers, to let people see and understand that people with disabilities get married also,” her mother Rosanne Stuart told The Mighty in an email.

black and white photo, madline stuart smiling in wedding dress
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
groom kissing madeline stuart on the head
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
madeline stuart in wedding dress with veil over face
Sarah Houston Photography | Photo courtesy of Rosanne Stuart

In the last year, along with appearing twice at NYFW, Stuart has made great strides in the modeling industry and in the advocacy world. “[Madeline] wants people to know Down Syndrome is a blessing,” Rosanne Stuart told The Mighty last year, “something to be celebrated.”

Stuart has had contracts with brands Manifesta and Living Dead Clothing, is the first face behind the GlossiGirl Cosmetics “Beauty Is…” campaign, had a one-of-a-kind doll made after her, and now is launching her own handbag line with a fashion company called EverMaya. The teen is also an ambassador for I Can I Will Australia, a nonprofit aimed at ending bullying. She acts as a mentor for young adults with special needs.

The photo shoot below is just the latest of her big accomplishments.

madeline stuart dancing with groom
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
madeline stuart holding bouquet
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
groom escorting madeline stuart down stairs
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
profile of madeline stuart in dress
Sarah Houston Photography | Photo courtesy of Rosanne Stuart
madeline stuart with black jacket over dress
Sarah Houston Photography | Photo courtesy of Rosanne Stuart

Related: Behind the Scenes With the World’s Most Famous Model With Down Syndrome


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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When I began my blog I admitted that while people often comment on my positive outlook, I am not always sailing through on a cloud of positivity. I struggle. I have days when the reality of the past five months sets in or the uncertainty of the future seems daunting. I told myself if I was going to write about our journey, I would be open and honest, and that includes the hard moments — the moments, days or weeks when the emotions hit. Some might wonder why I would write and share those moments with people. Why I would open myself up to that level of vulnerability, especially when those who know me know how I value my independence and strength.

In those first few days after my son Kaleb was born and we received the diagnosis of Down syndrome, I had many emotions I was ashamed of feeling. “What loving person would ever have these feelings?” would often go through my head and result in me feeling even worse. They were feelings I could not even bring myself to tell my husband TJ, who came to grips with Kaleb’s health issues and diagnosis quicker than I did.

It was reading other mothers’ stories of receiving a diagnosis of Down syndrome that helped me forgive myself for having those feelings. I would read those accounts of mothers who admitted the feelings they experienced and the time it took them to accept. It helped me know I was not alone in my initial feelings and that while I couldn’t see past my current feelings, there was hope ahead. So if admitting my moments of weakness and my struggles can help a parent who has received a health diagnosis for their child move forward, then I will gladly share my experiences.

I can honestly say I have experienced those feelings of frustration, sadness and jealousy of others less and less often, as others who have traveled this path told me would happen. This week I did have one of the harder days I had experienced in a while. Tuesdays are one of my days to go to Oklahoma Wesleyan University and teach my courses and take our other son, Kaden, to day care while TJ works from home and cares for Kaleb. While dropping off Kaden I had one of these moments. I had just taken Kaden to his room and to his teacher he adores. I was walking back down the hall towards the exit, and it happened. As I passed by the nursery room, I couldn’t help but think that if things had gone differently, I would be dropping Kaleb off to this very room. I stopped for a moment and looked in the window and thought I would have been able to look in this very window and see him swing, play or sleep as I saw the other children doing. I could just picture him in there with that head of hair, those chubby cheeks and those big eyes taking in the room. Instead, he was at home with his weakened immune system, oxygen, feeding tube and monitor. Grief hit hard, and I struggled to see through my tears as I made my feet keep walking.

Those feelings of life being unfair held as I drove to campus and worked to let them go. Soon after I received a call from TJ telling me that our insurance did not help cover any home medical care as we had been led to believe. With TJ’s golf tournaments beginning, we had been preparing for him being gone on Tuesdays and had set in place a home health nurse to come in on those days. One week before the day this was set to begin, we found out we would not be able to afford to stick with our plan.

As I got in bed that night and closed my eyes, the image of Kaleb in that room was back. Amidst my emotions of the day, I had failed to see what I was beginning to understand in the quiet of the night. The Down syndrome and prematurity I had been so frustrated with were simply a part of Kaleb. That extra chromosome was a part of those irresistibly kissable cheeks and the beautiful eyes I love so much. That extra chromosome can be found in the little hands he likes to place on my face or neck to reassure himself I’m still holding him. I could be frustrated all I wanted that he had to have such a rough start to his life, but if it wasn’t for him being born prematurely, he might not even be here with us due to the blood flow issues that could have killed him. The thought of that is unbearable as I already cannot picture my world without him in it. I could choose to focus on that extra chromosome that can create extra obstacles for him, but Kaleb has continued to show he is writing his own rulebook and will do his own thing. He has continued to show his fight for life from the moment he was born.

I was then reminded of Amy Julia Becker’s book, “A Good and Perfect Gift.” In her book she refers to discussions with her husband asking the question, “If you could, would you take away that extra chromosome?” She admits in the beginning it was a yes. As her daughter Penny grew, she wasn’t so sure, and then it became a no. It became a no because that extra chromosome was a part of her. If it were to be taken away, what parts of Penny could potentially be gone as well? Would it change her smile or her laugh?

I’m not there yet to where I would say I wouldn’t remove the extra chromosome if I could for the extra obstacles he will face. I can, however, tell you I already find myself wondering if that extra chromosome was gone, to what extent would it change the baby boy who has captured my heart and has continued to amaze me with his strength and spunk.

I am human and I know there will continue to be rough patches when my emotions attempt to get to me. There will be times when I hear of friends who had a seemingly perfect pregnancy and delivery, and it will give me a twinge of envy. I will see friends with their kids and hear them go on about trying to juggle it all with all their activities, dinner parties, etc. and will fight the urge to let them in on our schedule. Instead, I will work to thank God for them and their children while giving thanks for my own two boys. While I admit I may at times have moments of jealousy when life feels difficult, I wouldn’t trade our family for anything.

woman kissing baby's cheek
Amanda and Kaleb.

I look back and see two versions of myself: the person I was before this journey and the person I have become after. We may have new bedtime routines that most do not have, such as the medical equipment cart we wheel from room to room as we move Kaleb, feeding him through a tube, or keeping track of his daily medications. However, it has opened up our family to communities of people, such as those in the special needs community, that we may not have met and gained a new respect for otherwise.

Sure, it is not the journey I anticipated, but I will lay in my bed and fall asleep listening to the baby monitor with sounds of the oxygen compressor helping Kaleb, and I will thank God for my two boys we have been blessed with, extra chromosome and all.

Follow this journey on Adventures, Reflections, and Life Lessons.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.


I am not a political person, but I do make sure to exercise my right to vote.

Back in grade school, we had a mock presidential election. We were all able to vote for our favorite candidate and the winner was announced over the PA system. I imagine this was to help us understand the concept of a democracy and the importance of voting. We were kids, so we really did not have a true understanding of politics or the repercussions of the policy changes being promised by either party. Essentially, we were voting for whoever our parents or friends were voting for. As we grew up, we started to form our own opinions and interests and that influenced your party choice or the candidate you supported.

Now, I am an adult. I go to work, I pay taxes and I am raising two little people, one of whom has special needs. Have my initial political views changed? You bet.

young boy standing next to girl in carseat
Danielle’s kids, Ethan and Elisa.

I am now less concerned with party loyalty and more concerned with finding a candidate that’s building a better world with my tax dollars.  My ideal candidate would make policy changes to make the United States safer for my kids, someone who creates opportunities for Ethan and Elisa rather than challenges.

Unfortunately, I don’t see anyone fitting my description in this year’s coming election.

While I sit at home and watch the news, I see candidates pitching tax increases and decreases, plans for national security, plans for social security. I’ve watched candidates lobby for votes from Texas, votes from women, votes from minorities. It seems they all think they are the best matched for particular constituencies. Now, as the mother of a child with Down syndrome, my political priorities are changing again: Who is going to be the best advocate for my daughter? And do any of these people even recognize my daughter as an important constituent?

Rarely do you hear a candidate talking about the disabled community, addressing their needs and talking about expanding their services. With Ohio’s primary looming, I got onto the Internet to find out what the candidates are saying about their stances on the disabled community. I am hard pressed to find much. I found my observation was not alone; journalist Annamarya Scaccia’s piece for the New Republic in January, “The 2016 Candidates Need to Stop Ignoring the Disability Vote,” echoes my thoughts:

“How candidates talk about disability on the campaign trail signals where their values stand — and what they might do if elected to the country’s highest office. Last election cycle, [RespectAbilityUSA CEO Jennifer Laszlo Mizrahi] said, people with disabilities were “totally ignored.” The current crop of candidates has a chance to change that.”

According to a study of the 2012 election completed by Rutgers and Syracuse Universities, over 15.6 million people with disabilities voted in that year’s presidential race. At least 3 million additional people with disabilities registered but didn’t vote. In 2012, the disability vote represented more than 18 million people. If I were a candidate, I’d think those votes might be worth mentioning in my campaign.

I know, I know — we are up against big issues as a country right now. Presidential candidates — and candidates for state and local offices — cannot mention every special interest group. I recognize that. I am, however, alarmed by the trend I am seeing on both the national and state level when it comes to funding.

Down syndrome is the most common chromosomal condition diagnosed in the United States. Each year, approximately 6,000 babies are born in the United States with Down syndrome, meaning Down syndrome occurs in about 1 out of every 700 babies. Yet its funding continues to be cut — currently it is among the least funded genetic conditions by the National Institutes of Health.

This presents a disconnect to me that I struggle to justify or explain.

As a parent, I am lucky. There are more resources available than ever before to help my daughter succeed. Unfortunately, not all children have parents who are able to commit to providing this attention or these resources. We are doing what we can to help her develop into a smart, independent young lady. If my daughter needs assistance with employment or housing down the road, I fear the programs that exist today may not be in place to help her if this funding trend continues. We have not yet begun to navigate schools, but I am worried by the policy changes that are being made at the state level, the lack of supervision of special education classrooms and inconsistent inclusion policies from district to district. If our lawmakers are not concerned with such issues during their campaigns, their time to shine and court us, do you think these issues will emerge once elected?

I am not sure who will get my vote come March 15, but I do know I am concerned for my daughter and her community. I worry for other people with disabilities who might not have access to the resources they need to have a good quality of life. For this week, however, I am mostly worried that the wrong people will be given the opportunity to be elected to our great nation, and when given the chance to change the world, it may not be for the better.

mother holding daughter in the air
Danielle holding Elisa.

A version of this post first appeared on Down Right Happy.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.


Sweet Caroline,

I am writing this when you are just about 10 and a half months old, because I see you are closing in on 1 year old, and I am just bursting at the seams to tell you how much you
mean to me.

When I first learned about your diagnosis, I was heartbroken. I looked to your dad to tell me what we were going to do, but he didn’t know either. He was full of the same kind of worry I was. All those dreams we had for our child, for you, now seemed so far off. It didn’t help that when we got our official confirmation of your diagnosis, after genetic testing, the doctor told me I would need to drive out of state if I so chose to have an abortion. I think about that now. I was always pro-choice, but why would that be the first thing you say to a mother who just received this news? Why not offer support? Why not give me numbers and names of some of the wonderful people I have now met and know?

Later at one of my many ultrasounds, when I asked these same doctors for support, crying, saying I was having a hard time… still nothing. I guess they could not tell us then that you would prove them wrong and be the person who makes us smile simply by lighting up the room with her big smile, the one who shows us so much love.

Caroline, you are so much more than your diagnosis. I learned this from you the moment you were born. The moment I heard your first cry. Daddy went over to see you and came back to me and told me how beautiful you were. In that moment, after hearing your first cry, I just knew it truly was OK. You were alive, you were here and I loved you instantly. I knew, no matter what, you were going to be my beautiful and strong baby girl.

Even though it was hard for you to breathe in those first moments, and they rushed you away, you were off that oxygen the next day and breathing on your own. Even though it was hard for you to eat in those first couple of weeks, you were eating most of your bottle and at home in just 19 days. Next, you were rolling over at just 7 weeks. Then you were sitting by 7 months. At 10 and a half months, you are closing in on crawling. You talk to us all the time. Your dad swears you call him DaDa, and there have been a few times when I believe you have looked at me and called me MaMa, too… but it could just be my mind playing tricks on me. You love your toys and love to play. You love your sister and our cat, Willow.

Baby girl

Sweet Caroline, there might be hard times ahead, but you have taught me to slow down and live for today. My anxiety, which used to be through the roof, has calmed down tremendously. Sometimes I think about the years ahead and what your life will be like, but for the most part, I am focused on who you are right now and what you are doing right now because that is what is so important.

You have inspired me to be a better person. If I say I am going to do something, I do whatever I can to be there and do it to the best of my ability. I know in order to be the best mother to you, I need to be able to follow through with things. I need to be there, and most importantly, I need to be the best me I possibly can. I can never thank you enough for that.

Love always,
Mommy

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.


“Guest Room” is an award-winning short narrative film that focuses on the relationship between a young couple with Down syndrome and the complications that develop after a surprise pregnancy.

Lauren Potter, from “Glee,” stars as Amber, and Michael Iovine plays her boyfriend Daniel. The 13-minute film follows their journey from the bedroom to the moment of truth where Amber takes a pregnancy test.

*Sign up for our Down Syndrome Newsletter*

ds-movie-social

ds-movie-couple

“Guest Room” won the audience award at the Dances With Films festival, and it was a 2015 nominee for the SXSW Grand Jury Award. You can watch it below or on the Short of the Week website, where it is currently a featured selection.

Director Joshua Tate already has plans to make a sequel to “Guest Room” called “College Girl,” according to the film’s website.

 

h/t Saving Down Syndrome

Related: We Love This ‘Glee’ Star’s Advice for Fans With Disabilities


Photographer Laura Duggleby, based in Topeka, Kansas, recently had the opportunity to do a portrait shoot for a woman named Nicole, who has identical twin girls with Down syndrome, Blakeley and Brynnlee. The odds of identical twins being born with Down syndrome is approximately one or two in a million.

*Sign up for our Down Syndrome Newsletter*

Nicole told Duggleby that she “cried and cried and consulted family for support” after both her unborn children were diagnosed. But she now believes the challenges of raising twins with Down syndrome have made her a better person, and she “wouldn’t change it for the world.

Photo of two baby twins with Down syndrome, laying on a soft pink blanket.

Black and white photo of the twins with Down syndrome laying on a blanket.

The twins with Down syndrome suck on binkies.

A baby with Down syndrome lays on a blanket.

Nicole also opened up about some of her fears. She told Duggleby she’s worried about them being teased and about the possibility that they may not be able to live on their own. She’s thankful for an amazing support network of family, friends and the Down Syndrome Guild of Kansas City.

“I feel so honored to have met Nicole and get a glimpse of this beautiful, yet hard journey she is on,” Duggleby wrote on her website. “I love her tenacious spirit to fight for her girls with all her might and love them fiercely as they deserve.”

A baby with Down syndrome laying on her back on a pink blanket.

A close up of the twin's feet.

“I feel as if so much of the bad gets out in the media, and yet there is not enough shown on the love that is being spread and the sacrifices people are making on the daily,” Duggleby told The Mighty in an email. “I truly long for people to feel valued, loved and appreciated for what they are doing! ”

Twins with Down syndrome.

A baby with Down syndrome laying on her back.

All images courtesy of Laura Duggleby

For more photos, visit Laura Duggleby on the web and Facebook.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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