Local couples cope with children’s terminal illness

September 6, 2012

fdlreporter.com | September 1, 2012

Two Fond du Lac children – 1-year-old Mateo Medina, son of Amy and Adan Medina and 3-year-old Lucy Zahn, daughter of Barb and Noah Zahn  are unable to adequately breathe, eat or flex their muscles on their own due to a genetic muscular disease known as Spinal Muscular Atrophy.

Lucy Zahn and Mateo Medina can’t walk or talk, lift their heads, arms and legs, and cannot sit up. They express themselves through eye movement.

The children lay flat and are hooked to feeding and breathing tubes, as well as a machine that helps them cough because they lack muscles to do it on their own. Their parents manually suction the mucus from their little bodies.

Lucy and Mateo have Type 1 SMA, the most severe form of the disease. Most infants born with Type 1 SMA or who are diagnosed within the first six months of life are predicted to have a life span of just two years, according to the website www.fsma.org.

Lucy has already surpassed that prediction. She had her third birthday on July 9. It was an event she celebrated with Mateo, who celebrated his first birthday the next day.

“We need to spread awareness about this disease and the fact it is the No. 1 genetic killer of children under 2 years of age and that there is no treatment or cure,” said Amy Medina, a full-time social worker for Fond du Lac County who hires nurses to care for her son while she works and her husband sleeps in preparation for his night job.

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September’s legacy: Taking on Harvard in a wheelchair

August 27, 2012

CNN | August 27, 2012 | By Ben Mattlin

For many, back-to-school is a season of anticipation, nostalgia, and shopping. For me, it evokes memories of an unsung historical event: the integration of Harvard.

No, I’m not talking about racial integration; I’m talking about the full inclusion of students with disabilities.

When I entered Harvard College as a freshman in 1980, it happened to coincide with a new requirement — all institutions receiving federal funds had to become fully accessible under Section 504 of the Rehabilitation Act of 1973.

I was a 17-year-old lifelong wheelchair-user, born with a neurological condition called spinal muscular atrophy. I’d never walked or stood and my arms were weak as a baby’s. But, as my parents often said, there was nothing wrong with my head.

I had little awareness of the precedent I was setting.

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Richmond Family Learns, Lives, And Grows Despite Struggles

August 25, 2012

WTVQ-ABC | August 24, 2012 | By Amanda Stevenson

[VIDEO]: Richmond Family Learns, Lives, And Grows Despite Struggles

Danika Stockings, 15, has spinal muscular atrophy (SMA) a disease that causes muscle damage and weakness.

Unfortunately, it gets worse over time–as a child, Danika could walk with braces, but lost the strength to do it over time.

Now, the teen’s confined to a wheelchair.

Showering, dressing, and even getting up in the morning are all processes that others have to help her with.

Danika was adopted by the Stockings from Russia when she was 11 months old.

They brought her home on Christmas Eve…a running joke in the family that she was that year’s Christmas gift.

Four months later, though, she was diagnosed with SMA.

Nearly fifteen years later, she’s completely used to the disease…and strives to make her life as normal as possible.

Her younger sister, Ellie-Kate, even helps, offering to take the responsibility of caring for her once she’s old enough to do so.

So even despite the hardships of having SMA, Danika and family wouldn’t have it any other way.

You can help people like Danika in your own community by donating during the MDA “Show of Strength” on Sunday, September 2nd from 8 p.m. until 11 p.m right here on ABC 36.


Taunton girl battles spinal muscular atrophy

August 18, 2012

Taunton Daily Gazette | July 30, 2012 | By Marc Larocque

About 11 months ago, Ashleigh Jacques was born to a Taunton family, appearing to be a happy and healthy baby.

But at three months old, her parents noticed frightening signs that something was terribly wrong with their daughter. She couldn’t move.

“We were all concerned,” said Ashleigh’s mother, Kristen Jacques, a social worker who lives in East Taunton. “She wasn’t moving at all. She wasn’t rolling over. She couldn’t lift her head. She had a hard time with her hands.”

Three months later, Ashleigh was diagnosed with Type 1 spinal muscular atrophy (SMA), the most severe form of the motor neuron disease. Doctors have given the baby a life expectancy of just two years.

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Avery’s Bucket List (Video)

April 19, 2012

Avery’s Bucket List (Video)

FOX (Houston) | April 17, 2012 | By Sally Macdonald

HOUSTON – A five-month-old Houston baby is on a mission to teach the world about her fatal genetic disease. You’ve likely never heard of Spinal Muscular Atrophy, but 7.5 million Americans carry the gene that causes it.

Doctors have given Avery just 18 more months to live.

“Nothing will ever be the same as far as what’s important,” said Laura Canahuati, Avery’s mommy.

“I don’t want my daughter to die in vain, and I feel like if someone doesn’t tell her story that’s what’s going to happen,” said Mike Canahuati, Avery’s daddy.

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One Family’s New Normal [Video]

April 19, 2012

One Family’s New Normal [Video]

Columbus Parent | By Jane Hawes

It’s called Spinal Muscular Atrophy Type 1 and it has become the “new normal” for the Kingsley family.

Scott and Allison Kingsley’s youngest son Brett was diagnosed with SMA-1, a disease that affects voluntary muscle movement, when he was 7 months old. He just turned 6 in March and continues to beat the odds, thanks to a family-based system of care and what his mother calls their “circle of hope.”

It’s a circle that starts with Brett or “Prince Brett,” as Nationwide Children’s Hospital social worker Lori McCullough and other staff members there have dubbed him. He’s a blond-haired boy with dark eyes that move constantly, taking in everything around him, and elegantly long fingers that dance across the controls of the DynaVox, a speech-generating device, that talks for him.

The next ring of the circle is populated by his immediate family. Allison is the mom. You could call her a homemaker, but to do so you’d have to expand your definition of “home” to include most of the 614 area code. When she isn’t overseeing much of Brett’s therapies, doctors’ visits and all three of her children’s schooling in the Hilliard district, she’s giving speeches to new employees at Nationwide Children’s Hospital as part of their Family Advisory Council’s “Family as Faculty” program. And, of course, she’s also getting everyone else in the family fed, clothed and off to school, work or church each day.

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Diagnosis: Creeping Weakness

April 15, 2012

Creeping Weakness

New York Times Magazine | April 13, 2012

“You need to see a doctor,” the woman told her 27-year-old daughter. “Really,” she insisted. “I’m worried.” Her daughter, who lived several states away, was visiting, and when the mother happened to see her go up the stairs, she was struck by how odd this simple, everyday action looked. Her daughter’s slender hips rocked from side to side as she moved up the steps. It was as if she had to lift her entire body to bring up each leg. Her mother was certain that something was wrong.

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Ms. Wheelchair Massachusetts encourages others to pursue their dreams

April 15, 2012

Ms. Wheelchair Massachusetts encourages others to pursue their dreams

Community Advocate | April 13, 2012 | By Sue Wamboldt

Marlborough – Most Sunday mornings Patti Panzarino can be found attending church service at Greater Grace Christian Fellowship in Marlborough, 187 Pleasant St. Outside of the sanctuary, she is not only a founding member of the band, OLYPSYS, but she has recently been crowned Ms. Wheelchair Massachusetts.

Panzarino was born with Spinal Muscular Atrophy Type 2 (SMA 2), a genetic disease in which loss of nerve cells in the spinal cord affects the part of the nervous system that controls voluntary muscle movement. Although Panzarino has lived her life in a wheelchair, she has not let her disability get in the way of her dreams.

Panzarino brought her message of empowerment to the Ms. Wheelchair Competition March 3. Her platform of “Creative Perseverance,” born out of life experiences, inspired the judges to crown her Ms. Wheelchair Massachusetts 2012 at the Massachusetts Hospital School in Canton. The mission of the Ms. Wheelchair America Program, and the individual state programs, is to “provide an opportunity for women of achievement who utilize wheelchairs to successfully educate and advocate for individuals with disabilities,” according to the organization’s website http://www.mswheelchairmass.org.

“The platform for my year as Ms. Wheelchair Massachusetts is ‘Creative Perseverance.’ This has actually been the theme of my whole life,” Panzarino said. “I learned to self-advocate from my older sister who mentored me at a very young age. The more that people with disabilities push through obstacles and participate in life, the more people will see us and our acceptance and encouragement to participate increases. It becomes an upward spiral.”

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Beating the odds against Spinal Muscular Atrophy

February 15, 2012

Beating the odds against Spinal Muscular Atrophy

The Chronicle | February 15, 2012 | By François Lemieux

There are things in life we take for granted, like walking, eating, or using our muscles for the basics of day-to-day activities we need to get through work or school. Eleven-year-old Sammy Cavallaro doesn’t have this luxury. He has Spinal Muscular Atrophy (SMA), a motor-neuron disease that confines him to a wheelchair and impairs his muscular movements.

On Feb. 18, Sammy’s family is organizing a major fundraiser to generate awareness of the little-known disease and to raise funds for research. The event, called ‘Sammy’s Valentine Gala’, will take place at 6600 Montée de Liesse in Ville St. Laurent.

“It’s like an Italian dinner; we eat, we drink, we dance, there is a silent auction, there are raffle prizes, just a lot of fun and you give to a great cause,” said Sammy’s mother Rosa Cavallaro, last week. “Every year we do a fundraiser, around Valentine’s Day. This is our ninth one.”

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Ella’s Story: ‘I’m Not Here to Save Her. I’m Here to Take Care of Her’

February 2, 2012

Ella’s Story: ‘I’m Not Here to Save Her. I’m Here to Take Care of Her’

ElmhurstPatch | February 2, 2012 | By Karen Chadra

Ella Casten is a smart, inquisitive little girl with a smile that will melt your heart.

In most ways, she is a typical 1 1/2-year-old. She loves her dog, her toys, and her brother and sister, Henry and Ava. She speaks in cute toddler language and wants to do things all by herself.

But she can’t. Her muscles won’t let her. Ella has a rare, genetic neuromuscular disease called spinal muscular atrophy, for which there is no treatment or cure. Her motor neurons are dying, causing her to lose muscle function. She first lost the use of her legs, and now she has trouble reaching and lifting even small toys.

Ella was born on June 10, 2010. She started out seemingly healthy, hitting all the normal developmental milestones in her first year. She began to stand and take a few steps.

Just five months ago, all that changed.

Her parents, Lincoln Elementary School teacher Michael Casten, and Lindsay Casten, a former Lincoln teacher, began to try to unravel the mystery with the help of pediatricians and therapies. An Internet search revealed what they had hoped was not the answer.

“I’ll never forget that night,” Lindsay said. “I Googled hypotonia (poor muscle tone) and hand tremors and one of the things that came up was SMA. Of all the possibilities we had been told, we didn’t want it to be that.”

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