Madeline Stuart Model With Down Syndrome Takes a Stand to End Bullying

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Madeline Stuart, the world-famous professional model with Down syndrome, is paying it forward.

After walking the runway at New York Fashion Week last month, Stuart, 19, returned home to Australia and attended a pair of events for I Can I Will Australia, a nonprofit aimed at ending bullying. I Can I Will has a mentoring program that pairs young adults with children with special needs, or youths who are “struggling socially,” and Stuart serves as an ambassador for the organization.

Stuart speaks at events and does photo shoots with the organization. On Friday, Feb. 26 Stuart attended the Be Fabulous Ladies Luncheon at the Moo Moo The Wine Bar + Grill in Brisbane, and modeled designs by Miss Henry Boutique at the gathering. I Can I Will partnered with the restaurant in a bid to raise $100,000 over the course of the year, which they hope will put 2,000-4,000 Gold Coast children into their program, according to its Facebook page.

Madeline Stuart at I Can I Will fundraiser event
Image courtesy of Madeline Stuart
Madeline Stuart at I Can I Will Australia charity event
Image courtesy of Madeline Stuart

Stuart later attended the Philanthropists Luncheon at Jellyfish restaurant for anotherI Can I Will fundraiser, and she was happy to pose for a number of photos with fellow guests at the event.

Rosanne Stuart told The Mighty her daughter is embracing her position as a role model, and happy to use her fame to raise awareness for ending bullying. “Maddy just likes to show people that if they believe in themselves they are capable of anything,” Stuart told The Mighty. “To never give up or doubt yourself.”

Madeline Stuart at I Can I Will Australia charity event
Image courtesy of Madeline Stuart
Madeline Stuart at I Can I Will Australia charity event
Image courtesy of Madeline Stuart

“Maddy has always wanted to help everyone and share everything she had with her friends,” Stuart added. “Now she just feels the love from everyone, and she feels so very special.”

 

Madeline Stuart at I Can I Will Australia charity event
Image courtesy of Madeline Stuart

In addition to her modeling career and philanthropy work, Stuart is also an ambassador for the InsideOutside Dance Ensemble, a dance group for people with disabilities.

For more updates on Stuart, be sure to visit her Facebook page and website.


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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12 Powerful Things People Said to New Parents of Babies With Down Syndrome

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When parents are first told their baby has Down syndrome, the words that come after — whether they’re from a medical professional or loved one — are so important. Recently, we asked members of our Facebook communities the following question: “What’s one thing someone said that really resonated with you after your child was diagnosed with Down syndrome?” These are just some of the powerful responses:

1. “After getting our prenatal diagnosis, I was having a hard time coming to grips with our new reality. A friend told me, ‘She’s still the same baby you’ve loved for the last 20 weeks.’ — Brenda Hickson

2. “Congratulations! He is beautiful!” – Alecia Talbott

Congratulations! He is beautiful!

3. “Our pediatrician recommended getting the blood test a few days after he was born, raising some concerns. He said, ‘You have a beautiful son; whether he has it or not isn’t going to change the way you love him.’” — Elisabeth Withrow

4. “My doctor told us she suspected our daughter had Down syndrome shortly after her birth. Then she said something like, ‘Regardless of the test results, she is a blessing who will be very much loved by her parents and siblings.’” — Jodi Dielschneider Parsons

5. “It is not what was said, but what my sister-in-law did. When my son was born with Down syndrome, I was 22 years old and devastated. It was a scary, uncertain time, and my sister-in-law came to visit us. She picked him up, cradled him and sang to him. She told him what a precious and beautiful baby he was, and it was then I felt everything would be OK. No one else took the time to acknowledge him in that way. Twenty-six years later, I could not be more proud of our son. He is a beautiful person! — Tara Parham

6. “She is so beautiful.” — Trisha Glover

7. “After our son was born, my husband came back up to the hospital with a stack of books about Down syndrome and said, ‘We’ve got this! We’ll just learn everything we can and love him.’ And that’s exactly what we did. His response set the tone for our whole family.” — Alethea Jo Mshar

"We've got this! We'll just learn everything we can and love him."

8. “A coworker said, ‘I’m so happy for you!’” — Jennifer Weimer

9.‘Sophia is coming home, Sophia is coming home.’ This was a quote from my son, Sophia’s big brother. He was 2 and just filled with so much excitement and pure joy to hear his sister was coming home from the hospital. [It] brings me so much joy to see how much they love each other and are protective of one another.” — Lynn Amato

10. “Enjoy him being a baby first. Yes, the therapies and appointments are time-consuming and important, but so is nurturing those precious moments that go by so fast.” — Tina Corley

11. “Stop worrying about the future and love him now. He’s a baby like any other.” — Bernadette Maughan

12. Love her… that’s all you have to remember. Love her. — Jamie Stephany

"Love her... that's all you have to remember. Love her."

*Answers have been edited for brevity and clarity.


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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One Single Piece of Advice I’d Offer All New Parents of Children With Down Syndrome

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Welcome! You are now officially members of the club we like to call, “The Lucky Few.” Membership perks include: extended snuggles, celebrating every single milestone, beautiful almond-shaped eyes that will take your breath away when you least expect it and the knowing smiles from strangers on the street that act as our secret handshake — they’re part of the club, too, and just want you to remember you’re never alone.

Baby girl smiling

If I can give you one single piece of advice, it would be to make this your mantra: “Everything is possible.” I know the phrase is usually “anything is possible,” but when speaking about our life with our daughter, Lily, I never liked the way it implied there may be some things that weren’t possible. Lily is living proof that everything is.

Here is where I have to let you in on a tiny secret: Lily is adopted. My wife, Jessica, and I knew we always wanted to build our family through adoption, and we have a background of working with people with special needs. When you choose adoption, there is a list of questions a social worker goes through. For us, the question, “Would you accept a child with Down syndrome?” was the easy one because it was a world we already knew and less intimidating than the complete unknown.

This is where I commend you. Joining this club is so different for every single person, and maybe this is your scary unknown, but you’re here, and if you’re here, then you’ve taken the first steps to face the scary and embrace the adventure. 

Perhaps you’re having trouble imagining what life is going to look like in two weeks or even five years down the road, but the fact that you’re trying to picture it is a great start. Try to remember not to compare — that no two children are the same, and that includes two children with Down syndrome.

Girl on the sand near the ocean shore

Lily, like so many other children with Down syndrome, also has a congenital heart defect which, at 7 months old, led to a cardiac arrest and a brain injury that caused her developmental to restart. At 5 years old, she’s just beginning to walk with the help of a walker or some guiding hands and is working on how to communicate with us through more than just giggles or tears. For two people who thought we knew all about the road we had chosen, we suddenly found ourselves facing the complete unknown.

Girl using her walker outside

There are days the road has seemed long and impossible; days when we’ve sat her down beside her peers and almost cried seeing how far apart they were in their skill levels.  It’s so easy to watch two children playing side by side and get overwhelmed at the differences. Those are the times we’ve needed to remind ourselves of our mantra — that everything is possible. In our house, we call it “Lily Time,” and we use it to remind ourselves that Lily will do everything as long as we allow her to do it in “Lily Time.”

Girl sitting on the steps

I’m not saying to ignore the voices of the therapists and doctors who are helping you along the way. I’m just suggesting that sometimes you need to throw away the charts and the calendars and just watch. Take the time to look backwards and see how far you’ve all come since the day you first joined this club, and choose to celebrate that instead of trying to figure out what comes next.

For the number of days we’ve felt frustrated, there have been hundreds more filled with giggles and hugs; days filled with an absolute pure joy at being part of a club that truly allows you to witness that everything is possible.

Follow this journey on Giggles and Hugs.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

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The Statistic I Didn’t Know When My Son With Down Syndrome Was Born

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“We believe your baby has Down syndrome.”

You’ve just birthed a baby, a beautiful pink crying baby. And within moments, these are the words filling your brain. The thrill, the adrenaline of birth, the new, fresh excitement is weighed down, heavy, in the pit of your stomach, by that greedy monster of fear. The unknown. It feeds on fear like no other.

Then the statistics. Those cold, hard statistics handed to you in a perfect crisp folder that immediately begins to wrinkle under the sweat of your hands. Oh, and the faces surrounding you as you lay in your hospital bed. Everyone, the doctors, the nurses, family and friends, look down on you full of concern, sadness and the worst, pity.

Some well-meaning friends offer a half smile and “but he will always be happy.”

Your mind swirls with all of the new doctors you and your baby will soon be visiting: geneticists, endocrinologists, cardiologists, ENTs and ophthalmologists. How fast your mind can go from feeling bright, wide and expansive, to shrinking within the sterile confines of four white walls of a hospital room.

Where are the colorful bouncing balloons strung up with pretty ribbons? The flowers? The smiles, the laughter, the blue cigars?

Fast forward nine years later, we are at your son Wil’s birthday celebration. It’s in a bowling alley/arcade. He has just bowled a game with 11 of his friends from school, many of them girls; the girls just love him. Wil and his friends will soon enter the arcade, where Wil will swipe his game card and play all the same games as his friends. But now they are all about to dig into their chocolate cupcakes. Wil is poised over his cupcake, sucking in a deep breath, ready to blow out the bright flame of the number nine candle stuck in its center. His friends sit lined down the table, hands raised and waving in cheer.

Even outside the borders of this birthday picture, the story continues to unfold. There stand the mothers of some of these children who have helped pass out pizza and now the cupcakes. They are refilling cups of fruit punch and Sprite. Most importantly, they are raising children who love and support Wil.

According to Wil’s friend, Seeger, who is sitting at that birthday table, Wil spends 5 percent of his life giving hugs. He’s also quite good with his manners. Seeger wrote Wil a personal friendship note thanking him for “being a good friend and saying please and I hope your day is fun and awesome.”

Yes, those statistics in that heavy folder that was handed to me on Wil’s day of birth are very real and very important. But, what I didn’t know nine years ago that I do now is there is always a bigger story outside of the folder, outside of the four hospital walls and outside the border of every picture. No one snapshot can ever tell the whole story.

In March, Wil and I will sit on a panel in front of medical students at Wayne State University. They will want to know my personal story in how to present facts about Down syndrome to brand new parents. I will share with them what I believe is one of my son’s most important life statistics: that Wil spends 5 percent of his life giving hugs. Isn’t that just awesome?

9-year-old boy having a birthday party -- he and his friends are sitting at a table, eating pizza and cheering as he starts to blow out the candle on his cupcake

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.

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Birth photo of baby boy

To the Med Students Who Will Deliver an Unexpected Down Syndrome Diagnosis One Day

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Dear Medical Students:

Thank you for choosing a noble profession and for being motivated by a desire to help people. At times you may wonder why you’re studying so hard, putting in long hours and putting yourself into tremendous debt. It’s because you want to make a difference, and you surely will.

*Sign up for our Down Syndrome Newsletter*

You’ve spent hours on clinical training, learned about countless conditions and read thousands of pages that will help you solve medical mysteries. But there’s so much packed into the medical school curriculum that an hour-long lecture and a single patient lab might be the extent of “delivery of diagnosis” classroom education you receive.

At some point, you will have to deliver a difficult or unexpected diagnosis. Patients will listen to your words as you deliver them, so use them carefully. What you may not have learned is that your words have incredible power, and for some, your words will have impact for the rest of their lives.

On November 8, 2010, I heard words that would forever impact me. We suspect your baby has Down syndrome.

On the surface, the doctor, a pediatrician, delivered the diagnosis in a way that would almost have been like a case study in a textbook. Her tone was soothing. She was matter of fact. She provided us with what evidence they had so far (creases on both palms, extra space between my baby’s first and second toes, low muscle tone). She told us that Down syndrome happens when someone has three copies of chromosome 21. She told us about heart defects, elevated risk for leukemia, thyroid conditions and cognitive and physical delays. She used words that were not too difficult for most patients to understand. She asked my husband and me if we had any questions.

If that had been a patient lab, she would have scored well. She did all she was supposed to do.

She devastated me.

Yes, part of it was the unexpected diagnosis, but part of it was what was left unsaid, and that part would have helped so much. And now, every year around my son’s birthday, as I’m preparing to celebrate him, it’s bittersweet because I remember the intense grief that accompanied his birth, his diagnosis.

You see, future doctors, delivering a diagnosis is not merely about providing a list of symptoms and a litany of potential problems in a soothing tone without medical jargon. It’s about painting a more complete picture. In that diagnosis moment, my dreams changed, and the picture was out of focus.

To nail the diagnosis experience, the doctor could have started with the words, “Congratulations! You have an amazing baby boy.” Because I did not hear those words, I remembered being confused later when I heard it from one of the nurses. I wondered whether congratulations was something you said to someone who receives an unexpected diagnosis. I know now that of course you say it, and you say it enthusiastically, because a baby is first a baby.

Birth photo of baby boy

To continue with the positive experience, she could have provided some resources. We started with Google. If you’ve ever tried using Google to find medical information, you will see that the volume of information is overwhelming, and much of it has little educational value. The doctor could have shared with us links to the websites for the National Down Syndrome Congress and the National Down Syndrome Society. She could have provided the names of some books that would have been helpful, like “Babies with Down Syndrome.” She also could have shared the article “Health Supervision for Children With Down Syndrome“(this is the most recent update) so we could read it and provide it to our pediatrician.

The physician could have referred us to the two Down syndrome centers in our region, could have connected us with a hospital social worker (we asked to see one on our own), could have given us information on how to connect with the county’s Early Intervention services, and could have connected with our county’s Down syndrome group. If she didn’t know that information, the National Down Syndrome Congress has a link one can use to find a local Down syndrome group.

Finally, to really nail the diagnosis, the physician could also have had educated us on the possibilities. She could have told us that though there were things that would be difficult for our son, some things might come easily. She could have told us that if we have high but reasonable expectations, our son would rise to them. She could have told us that people with Down syndrome may live on their own, drive cars and go to college. The More Alike Than Different campaign of the National Down Syndrome Congress illustrates these points perfectly.

Future doctors, you will soon be seen as a figure of authority. Your patients will wait to hear your words with a mixture of anticipation and fear, and your words can affect them for a lifetime. What you share during a diagnosis can help move a person beyond that initial shock and grief, can help them find the appropriate resources and can help them get to the place I am now — thankful for my smart, sweet, funny, tech-savvy son
who has Down syndrome.

If you ever find yourself in the position of delivering an unexpected diagnosis of Down syndrome, I hope choose your words carefully and give plenty of information and resources.

Sincerely,
Julie Gerhart-Rothholz

Side by side photos of baby and little boy

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

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Cop Helps Teen With Down Syndrome Feel Comfortable With Law Enforcement

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Mallory Hamilton’s 19-year-old daughter Harley has Down syndrome and autism, and after an incident at a local movie theater, Hamilton began to wonder what might have happened if the situation escalated and police officers became involved.

Harley Hamilton was at the Tikahtnu Regal Cinemas in Anchorage, Alaska, with her aide, and after she became stressed, theater staffers grew concerned about her behavior and threatened to call the police if she was not removed, according to Alaska Dispatch News (ADN). (Regal Cinemas has not responded to requests for comment from The Mighty regarding the incident.)

Hamilton’s aide helped her out of the theater, but the experienced rattled the teen — and her mother. “You just don’t have any idea as a parent what is going to happen. It’s your worst nightmare,” Mallory Hamilton told ADN.

Fortunately Anchorage has the Crisis Intervention Team, a volunteer training program that helps educate its officers on how to handle individuals with special needs. Officer Matt Fraize, whose daughter also has Down syndrome, is a member of that team, and he and his wife Angie, who is also a cop, had an idea when Hamilton approached them asking for help. Matt Fraize would meet with Harley Hamilton for coffee at Sagaya City Market in Anchorage, and hopefully establish a positive outlook on law enforcement officials.

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, meets with Anchorage police officer Matt Fraize at Sagaya City Market on Wednesday, Feb. 24, 2016. Hamilton’s mother, Mallory, wanted Harley to meet a police officer so she would learn to trust them in the event they were called to a situation where they would have to interact with her.
LOREN HOLMES / Alaska Dispatch News

Hamilton has now had two meetings with Fraize, who told The Mighty he’s already seen a positive result.

“Harley asked me to sit right next to her, which her mom told me is very rare,” Fraize told The Mighty. “Harley was really excited to see my police car and she jumped right in the back seat.”

“I see these positive interactions with Harley and others in this community as paving the way for a more accepting and tolerant future for them,” Fraize said.

“I could not have asked for a better experience,” Mallory Hamilton told ADN. “They took the time and gave us the opportunity for peace of mind, which for me is huge.”

Michelle Slape, executive director at International Down Syndrome Coalition (IDSC), told The Mighty in an email:

“With the growing number of adults with Down syndrome living independently, working within the community and having independence, there is a great need for those outside of the Down syndrome community to understand the behaviors and mannerisms of individuals with Down syndrome (and other disabilities). What may be perceived as an aggressive behavior may in fact be a coping behavior when in a stressful situation. As parents, our job is to not only guide our children into becoming independent adults, but to help educate those around them of what Down syndrome is and isn’t. Old stereotypes of Down syndrome are constantly being broken. It is now a matter of helping to educate our communities.

I hope that eventually the Crisis Intervention Team program finds its way to every state.  Not only will it benefit the disability community but society overall. We can only hope that others will follow the lead of the volunteer officers and learn to have compassion for those with disabilities.”

LOREN HOLMES / Alaska Dispatch News Harley Hamilton, a senior at West High living with Down syndrome and autism, gives Anchorage police officer Matt Fraize a side hug at Sagaya City Market on Wednesday, Feb. 24, 2016. Watching at left is DeVon Brentlinger, one of Harley’s caregivers.
LOREN HOLMES / Alaska Dispatch News

To read the full story, visit ADN’s website and Facebook page


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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