Man’s best friend adds positive impact to kids with special needs

June 15, 2012

Man’s best friend adds positive impact to kids with special needs

FOX | June 11, 2012 | By Chris Olberholtz and Matt Stewart

LEAWOOD, KS (KCTV) – Dogs are amazing animals and can do so many things. Now, one national organization is pairing up service dogs with kids with special needs.

An 8-year-old boy from Leawood just brought home his new best friend, and the positive impact it has made in his life is amazing.

Every morning, the parents of 8-year-old Charlie Sykora lift him out of bed and buckle him into his wheelchair so he can get around.

Charlie has Type 1 Spinal Muscular Atrophy, or SMA for short. He can’t walk. It is hard for him to play with other kids his age. He has struggled to make friends. But now he has a new best friend.

Meadow is half lab, half retriever, and she has helped people see Charlie in a different light.

“Charlie had been saying he didn’t want to go out in public because he didn’t like people staring at him, he didn’t like that feeling,” Charlie’s mother, Kim Sykora, said.

Charlie says people never used to come up to him before, only his family and friends.

“With a dog, it opens it up, it gives people a reason to approach,” his mom said.

Click HERE or on the image below to read more and see a great video…

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Angela Wrigglesworth dubbed Klein ISD elementary Teacher of the Year

May 23, 2012

Angela Wrigglesworth dubbed Klein ISD elementary Teacher of the Year

Cypress Creek Mirror | May 10, 2012

Teaching wasn’t always Angela Wrigglesworth’s career goal. In fact, she likes to joke a fluke incident in college “railroaded” her into becoming a teacher.

Wrigglesworth was diagnosed with spinal muscular atrophy when she was 16-months-old and has been wheel-chair bound nearly all her life.

During her first year at Texas A&M, she planned on getting a degree in business, which included several classes on the other side of campus from her dorm.

One day on her way to an accounting class, she was crossing a set of railroad tracks with a group of students when her wheelchair came to a dead stop. The electric current that was caused by a train that had just passed short circuited her chair mid-way through the tracks. After several minutes of panic and offers by students to help carry her extremely heavy wheelchair out of harm’s way, the chair turned back on. It was in that moment, however, that she vowed to never cross those tracks again.

“Life can lead us down so many paths, and in this particular case, my situation literally put me stuck on some railroad tracks and really changed the direction of my life,” recalled Wrigglesworth.

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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

Vodpod videos no longer available.

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

Vodpod videos no longer available.

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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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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Mom Hopes To Build Playground In Daughter’s Memory

February 8, 2012

Mom Hopes To Build Playground In Daughter’s Memory

CBS Minnesota | February 8, 2012

Raising a big amount of money hasn’t come easy for one Woodbury mom who’s trying to do something special in honor of the daughter she lost.

Madison Claire Millington died August 2004 when she was only 2 years old. When she was diagnosed with Spinal Muscular Atrophy, her mom, Dana Millington, was told that Madison Claire only had one year to live.

Almost eight years later, Millington calls her youngest daughter Emerson a miracle. Emerson had a one in four chance of inheriting the same deadly muscular disease that took her sister, Madison Claire.

To ensure that Emerson wasn’t born with Spinal Muscular Atrophy, Millington and her husband used In Vitro Fertilization and a process which tests the eggs for genetic abnormalities before they’re fertilized.

The time spent with Emerson is special considering the difficulties of parenting a child with SMA.

“(Madison) had her special stroller. We had oxygen tanks we had to take with,” said Millington. “Even going to the park, we couldn’t go through the sand and rocks for me to also be with my other two children.”

It was that specific challenge that compelled Millington to help others. After Madison died, she made it a priority to raise enough money for a playground that every kid could use, in honor of her daughter.

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Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

February 7, 2012

Florence teens grant wish of 5-year-old with Spinal Muscular Atrophy

SCNow.com | February 3, 2012 | By Patricia Burkett

FLORENCE- A legacy of giving came full circle in Florence Wednesday, as high school students came together to honor the legacy of a former assistant principal while making one child’s dreams come true.

Members of West Florence High School’s student government began a fundraising campaign on Dec. 1, to collect money to grant the wish of five-year-old Grace Dixon.

Representatives from the Make-A-Wish Foundation asked officials at the school if they would like to help grant the wish of Dixon, who suffers from Spinal Muscular Atrophy.

The condition causes progressive muscle degeneration and weakness.

Grace’s mother, Robin, said she was very surprised when she found out that her child’s wish would be granted through the generosity of other young people.

“It was very heartwarming and amazing,” Robin Dixon said.

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