Inspiring Stories

Kennedy Krieger's new Center for Genetic Muscle Disorders helps mother and son live with muscular dystrophy. 
Lileen Walters

It’s 1976 and flash bulbs pop as eager relatives urge seven-year-old Lilleen Walters to smile for the camera. Feeling fancy in her flower girl dress, she fights to curve her lips into a smile to please the wedding guests, but her muscles won’t obey. Days and months go by, and Lilleen still can’t smile.

With hard work and faith, nothing is impossible.
Matt Courson

I've always been an athlete. When I was younger, I pitched the Amateur Athletic Union (AAU) World Series twice. After high school, I played baseball for the University of Arkansas at Monticello. But, despite those achievements, I never imagined how much physical strength I would need in a wheelchair. Late one Saturday night two years ago, I got on my fourwheeler to visit a friend, but I never made it to his apartment. My ATV (all-terrain vehicle) went over an eight-foot embankment, and I was knocked out. When I came to, I couldn't move. I laid there all night and staring up at the stars; I knew something wasn't right.

Overcoming complex regional pain syndrome.

It was a twisted ankle that finally brought Corinne down. After so many injuries-a broken hip, surgery on her knees and her shoulder-it was one small twist, something anyone would dismiss offhand, and Corinne was flat on her back, in absolutely unimaginable, intolerable pain.

SHNIC helps teachers learn about special needs.
Making the Grade

Bryan's teachers were at a loss for how to help him when he hid under his desk or back in the cubby area and cried. They knew he had been diagnosed with attention-deficit hyperactivity disorder; dysgraphia, a learning disability that affects writing abilities...

"When you have a child with special needs, you're often running to the doctor's office..."
Bringing It All Home

Having a child with special needs often makes parents feel as though they are spending their lives driving from one specialist to another, trapped in waiting rooms, and filling out forms. It was no different for John and Amy Thompson. Their son Jake was diagnosed with Rasmussen's syndrome, a brain disorder that causes seizures. Because of the disorder, he underwent a hemispherectomy, a surgery to remove half his brain. After the surgery, Jake needed many different therapies, and the visits to specialists seemed unending.

Project HEAL blends health care and advocacy.
Jeffrey

Life has dealt 14-year-old Jeffrey a particularly challenging hand. Jeffrey, who lives with his parents and sibling in a low-income neighborhood in South Baltimore, has bipolar, obsessive-compulsive, anxiety, and attention-deficit hyperactivity disorders

One family's autism journey
The Maloni Boys

Dominic Maloni could not have been a better baby. He was quiet and easy going. In his first year of life, he met all of the usual milestones sitting up, speaking his first words, walking.

At 13 months, he could organize his toy cars in a line from smallest to largest. He could even figure out a puzzle designed for a four-year-old in just two minutes. Still, he wouldn't look his mother in the eye or turn around when his parents called his name. "On one hand, we wondered, Is he a genius?'" remembers Jennifer Maloni, Dominic's mother. "On the other hand, he was too little to be purposely ignoring us."

Hugo Moser's widow Ann leads ALD screening efforts in newborns
Jose Casso Drinking Lorenzo's Oil

Ramón and Maritza Casso loved their first born son, Juan, with all of their hearts. Like many parents they wanted far more for him than they wanted for themselves. And when their second son, José, arrived seven years later, they felt the same way. 

A family's generosity helps advance care for hundreds of children and adults with spina bifida.
The Keelty Family

Less than 24 hours after he was born, Philip Keelty had his first major surgery an operation to repair the hole in his spinal column that defines his birth disorder, spina bifida.

Before Philip turned four, doctors installed a shunt to carry cerebral fluid from his brain to his spine and performed corrective surgery to allow him to walk with only a slight limp. 

Father's Memoir of His Daughters Courageous Journey
Hillary with Maureen van Stone

At nine years old, Hillary Reston developed a dangerous energy her father describes as "positively thermonuclear." If they turned their back on her for an instant, her parents often found Hillary perched on top of kitchen cabinets, swallowing staples and tacks, smashing glass tables and throwing knives.

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