Adolescents and Young Adults

The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities

posted on April 11, 2014 - 1:57pm
"Anything we can say about being a parent of a person with special needs we can pretty much say for being a sibling of a person with special needs," said Don Meyer, director of the Sibling Support Project based in Seattle. Meyer talked about siblings of people with disabilities at the 2014 MDA Clinical Conference in Chicago during an afternoon session titled "Specialized Care," held March 18.

Life-threatening complications at birth and progress in early childhood characterize congenital MMD1

posted on April 9, 2012 - 11:26am
QUEST Vol. 19, No. 2
Concern about Cody Beam started right away. "About 12 minutes after he was born, he quit breathing while my husband was holding him," recalls Cody’s mother, Tina Beam, of Arlington, Wash. Cody, born at Providence Regional Medical Center in Everett, Wash., was "very floppy and couldn't swallow," Tina recalls. He was whisked away to the neonatal intensive care unit, where he was placed on a...
posted on January 1, 2012 - 12:09pm
QUEST Vol. 19, No. 1
MDA Art Collection turns 20 The year is 1992 …

Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults

posted on October 1, 2011 - 3:32pm
QUEST Vol. 18, No. 4
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.” His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp. “We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...

Deciding to experience an abundant life allows for the fewest regrets in the end

posted on October 1, 2011 - 12:33pm
QUEST Vol. 18, No. 4
Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him. But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.

A psychologist who ran MDA parent support groups offers guidance on ways to handle misbehavior

posted on October 1, 2011 - 8:30am
QUEST Vol. 18, No. 4
The most important element of disciplining a child is to have your anger under control when doing the disciplining. When your anger is under control, you earn respect from your child, the discipline will be effective, and you are modeling how children can handle their own anger in a healthy manner. Your anger is under control when:

Get those cameras ready! MDA is seeking Make-a-Muscle pix and photos of accessibility makeovers

posted on July 28, 2011 - 10:33am
This summer, MDA is inviting everyone to participate in its new "Make a Muscle, Make a Difference" public awareness campaign by submitting photos of friends and family flexing their muscles for MDA. MDA also is seeking photos for its "Accessible Spaces Gallery" debuting in August on the MDA Transitions Resource Center, a website designed to help young people with muscle diseases make the...
posted on July 1, 2011 - 1:57pm
QUEST Vol. 18, No. 3
Thanks to improvements in diagnostic and clinical care, there’s a new population of people in the world: adults with “pediatric” muscle diseases. MDA is committed to ensuring bright futures for all our children with neuromuscular diseases who will someday “transition” into adults with a different set of needs than they had as children.