Judge Denies Guardianship to for Groom-to-Be with Down Syndrome

Talk about self-direction and person-centerd planning ... powerful decision.

A Brooklyn Surrogate Court judge denied a guardianship petition sought by family members of a 29-year-old man with Down Syndrome, saying their objection to him marrying was an insufficient basis for appointing them guardians.

Surrogate Court Judge
 Margarita López Torres

"The right to have a family of one's own is not reserved only for persons with no disabilities," Surrogate Margarita López Torres said, "and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

Madeline Stuart Hits the Runway

Madeline Stuart, an 18-year-old Australian model who has Down syndrome, walked the runway at New York Fashion Week on Sunday.

Stuart opened South African designer Hendrik Vermeulen's spring 2016 collection for the group FTL Moda in association with the Christopher Reeve Foundation and Models of Diversity. She follows Jamie Brewer, an actress who became the first person with Down syndrome to walk in NYFW earlier this year. 

Student with Down Syndrome Told He Can't Wear Sweater with Varsity Letter

In yet another example of insensitive, zero-tolerance approaches, school faculty members of Wichita East High in Wichita, Kansas reportedly compelled a special needs student athlete having both Down syndrome and autism to remove a varsity letter his mother bought for him. He was given instead a girl’s sweater to wear.

School officials stated he could not wear the varsity letter because he was not a member of the varsity team. Apparently they were forced to act upon this transgression because “one parent complained” and therefore no exception could be made for this student.

Nineteen year old Michael Kelley participates in extra-curricular basketball. His family bought him a varsity letter similar to what other students at the high school wear as a tribute to honor his athletic achievements.

Fashion Week Starts to Break Barriers

New York Fashion Week wrapped up and actress Jamie Brewer took the spotlight by making history and headlines by being the first model with Down syndrome at the event.

I believe many headlines used the term Down syndrome to label Brewer, but she should not be classified by her disability.

Raising Funds to Pursue Their Passion

If you missed the PBS NewHour last night, a wonderful story of empowerment and pursuing a passion.

Sam Suchmann and Mattie Zufelt are best friends. Three years ago, these teenagers with Down syndrome had the idea to make a zombie movie. Now, with help from their supporters, they have raised more than $50,000. The PBS NewsHour's Mike Melia reports on their project and how it reflects a shift toward empowering people with developmental disabilities to express themselves creatively.

A Mother's Story of Raising Her Child with Down Syndrome

One mother's journey, bumpy for certain, but ends with acceptance and Seeing Beyond Disability.

As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.

When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.

But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.

Down Syndrome: A Year of Grief and Joy From ABC NEWS

In one week from today it will be one year since I decided to become the mother of a child with Down syndrome.

It was March 21, 2013 –- World Down Syndrome Awareness Day. But I didn't know that. All I knew was I was 15 weeks pregnant, lying on a table, having an ultrasound and waiting for the tech to tell me what else was “wrong” with my baby.

Agencies Challenge New Hampshire's Transition to Medicaid Reform

NASHUA – Clients, parents and employees of Gateways Community Services packed a showdown meeting at Harbor Homes last week on the state’s plans to impose cost efficiencies on a state Medicaid system considered to be hemorrhaging money.

Medicaid officials told the Governor’s Commission on Managed Care that more than 100,000 Medicaid subscribers on Dec. 1 smoothly switched into care management for their visits to hospitals, clinics, doctors and other medical providers.

New Hampshire is the 48th state in the nation to offer managed care under Medicaid and state budget writers are relying on the reform to save $16 million in state spending over the next 22 months

Saylor Family Files Wrongful Death Suit

A federal court will decide who, if anyone, is responsible for the death of Robert Ethan Saylor.

Patti Saylor outside Maryland
State House.

Saylor, 26, died in January as he was being forcibly removed from the Regal Cinemas Westview Stadium 16 theater by off-duty sheriff’s deputies moonlighting as mall security guards.

Shopper with Down Syndrome Sold $1,700 Worth of Face Cream

From our neighbors to the north, a disturbing story. Yet once again the power of social media prevails.
 
ST. CATHARINES, Ontario -- A St. Catharines woman with Down syndrome who was sold $1,700 worth of face cream by a Pen Centre merchant is glad her experience is raising awareness.
Jovita deJong said at first she “felt bad” when she realized that products she thought were $5.65 and $11.35 were actually $565 and $1,135.

Va. Woman Wins Case; Moves in with Friends

A 29-year-old Virginia woman with Down syndrome who successfully fought her mother's attempt to be her guardian has moved in with friends, according to one of the people she now lives with.In a case watched carefully by advocates for people with disabilities, Margaret Jean Hatch, who is known as Jenny, had been fighting for nearly a year to be able to choose where to live. She succeeded on Friday.

Opinion: Ethan Saylor's Death Deservedly Under Investigation Again

Ethan Saylor would be alive today if Frederick County sheriff’s deputies had exercised good judgment and restraint.
Instead, they ignored explicit warnings from the caretaker who accompanied Mr. Saylor, who had Down syndrome, and physically confronted him over an unpaid $12 movie ticket. In the ensuing scuffle, he died of asphyxia. The Maryland medical examiner’s office ruled his death a homicide. A grand jury declined to bring criminal charges against the three off-duty deputies, who were working as security guards at the movie theater in Frederick.That shouldn’t be the end of the story.

Mom of Man with Down Syndrome Discusses Death at Cinema

Ethan Saylor simply wanted to see a movie one more time.

The Frederick, Md., man had just watched "Zero Dark Thirty" in a theater inside a mall and wanted to see it again.

Patti Saylor, right, is trying to publicize
her son's story at the Colorado Convention
Center Friday afternoon, July 19, 2013
 at the National Down Syndrome Congress

Saylor, 26, had Down syndrome — a genetic condition that impairs physical growth and intelligence. His condition was likely apparent to the off-duty sheriff's deputies working at the mall on Jan. 12 who were called to remove Saylor because he hadn't paid for another ticket. But those deputies clearly didn't know how to help Saylor work through the issue.

Saylor's aide told them to wait it out. His mother was on the way and he just needed some time. She warned them not to touch Saylor, who could quickly become agitated.

Scientists Find It's Possible To Silence Chromosome Responsible For Down Syndrome

Scientists have shown for the first time in a lab setting that it's possible to "silence" the extra chromosome responsible for Down syndrome.
The findings are detailed in an article published in the journal Nature. Even though the University of Massachusetts Medical School researchers were only able to show this in a lab dish (in vitro) and they noted that much more research is needed, they said it's an important step toward identifying potential targets for therapies for the condition.

Justin Bieber Makes Wish Reality For Fan With Down Syndrome

An 8-year-old with Down syndrome got to live out her dream, scoring a meeting with pop star Justin Bieber.
Marisa Cox has Down syndrome and recently underwent a kidney transplant.

During her many hospital stays, her mother told FOX5 San Diego that watching videos of Bieber and listening to his music appeared to speed the girl’s recovery.

Pope Francis invites boy with Down Syndrome for a ride on the Popemobile

 Pope Francis has given a 17-year-old boy with Down Syndrome the ride of his life – sort of. Francis invited Alberto di Tullio up onto his open-top Mercedes at the end of his general audience Wednesday, letting him spin around on the pontiff's white chair while tens of thousands of people looked on.

Defying the Odds with a Job

LAWRENCE, Kan.  — Lawrence man Ryan Banning is in every sense of the word an entrepreneur. For more than a decade, Banning, 36, has operated his own business, Ryan's Vending Service, managing a dozen or so vending machines in Lawrence.

He's always looking to expand, he said as he loaded the soda and snack machines at the Lawrence Municipal Airport recently.

And the bottom line for Ryan, who has Down syndrome, is that he enjoys the work and turns a profit.

Teen Couple Humiliated at Movie Theater Plan New Date Courtesy of Phillies

OK, even as a Mets fan, I have to post this and tip my cap to Philadelphia Phillies and their fans.

What first seemed like a humiliating date night for a teenage couple has set off a flood of support larger than even FOX 29 expected.

On Wednesday night, we introduced you to 17-year-old Annarose and 18-year-old Stephan. Both live with Down Syndrome and both are inseparable.

This past weekend, Stephan planned to take Annarose to an AMC movie theater in Marlton, New Jersey. The theater had assigned seating and the couple accidentally sat in the wrong row.

A movie theater worker told them to move to different seats that were separate from each other.

When Bill Met Shelley: No Disability Could Keep Them Apart

Bill Ott and Shelley Belgard.

From the cold and snowy northeast, a story sure to warm your heart.

Bill Ott will always remember the moment he met Shelley Belgard. It was in spring 1988. He was 12 and sometimes shy. Into music, sports and, suddenly, girls.
Shelley was three years older, chatty and outgoing. They’d both shown up at a Montgomery County social club looking for friends, fun and the kind of acceptance that seems so elusive during teen life.
Shelley smiled. Bill introduced himself. And that was it. “I didn’t know what love was,” he says. “Until I met her.”
He was sure it was the real thing, but nobody ever believes that coming from a 12-year-old.
Certainly not one with Down syndrome.

Radio Host Mocks Woman with Disability; Family Responds

Kellie Baker and her family being
interviewed by a local TV station. 

STRASBURG, Ohio --- The family of Kellie Baker of Strasburg hopes to raise awareness of bullying of people with disabilities after she was mocked by the host of a show on an Alliance radio station.
“My feeling is, if I can change the way one person thinks or feels, it would be phenomenal,” said Baker’s mother, Gigi Standiford. “Even better would be to change the way they react to people with disabilities.”