Limitations don’t stop Palm Beach Gardens digital painter from creating art

September 6, 2012

The Palm Beach Post | September 4, 2012 | By Michelle Kaplan

PALM BEACH GARDENS —

For every artist comes a day of reckoning. It’s the day when you chose either to charge down the path of passion or take the paved road that leads to a job and a steady paycheck. It’s the day you decide to give up the dream.

That day came for A.J. Brockman when he began to lose the use of his hand and realized he would put his paintbrush down for good — except this was no choice.

“To have to relinquish your passion because you physically can’t do it anymore, it takes something out of your soul,” said Brockman. He lives with Spinal Muscular Atrophy, often called SMA, a progressive neuromuscular disease that has left him wheelchair-bound since the age of 2.

Brockman, now 24, found a way to retain his passion despite his condition, and now everyone who visits city hall can appreciate what he has achieved. The city — Brockman’s hometown — purchased his digital rendering of a banyan tree and has hung the 8-foot-by-4-foot work in the city council chamber and hosted a reception for him in early August.

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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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Service dog on the way for 10-year-old Utah boy

August 28, 2012

The Salt Lake City Tribune | August 28, 2012 | By Justina Mccandless

Ten-year-old Carter Veldevere cannot ring a doorbell, pick up a pencil or open and close a door.

When Carter was 14 months old, he was diagnosed with spinal muscular atrophy type II, a degenerative disease that gradually disables muscle movement throughout the body.

He’s been on a waiting list for a service dog for four years. But on Tuesday, Carter’s classmates, teachers and friends and family celebrated the news that Milk-Bone and Smith’s Food and Drug Stores are sponsoring his request for a service dog from the non-profit Canine Assistants.

“I’m very excited for my dog,” Carter said. “It’ll be a great dog, and I can’t wait to get it.”

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These RNC protesters are determined to be heard

August 28, 2012

Orlando Sentinel | August 28, 2012 | By Scott Maxwell

TAMPA — Karen Clay is using alcohol swabs to clean and sanitize her son’s ventilator.

Michael Clay is 31 years old — and all of 73 pounds. He lays immobile on his back in his bed, staring at the computer monitor mounted above his bed.

Spinal muscular atrophy has robbed his body of the ability to move much of anything other than his eyes and forehead. Yet he is able to speak using technology similar to that used by Stephen Hawking.

Sensor pads on his forehead detect nerve pulses, allowing him to control a computer.

“Would you mind stepping into the kitchen?” his computer voice asks me.

Karen needs to finish dressing and prepping Michael for their protest.

The family lives in South Tampa, a few miles from the Tampa Bay Times Forum, where all the glitz and glamour of the convention are on display.

The Clays’ life is anything but glitzy. Yet they are happy. They simply don’t want to be ignored.

“I tell people I’m an M-O-M,” Karen explained, “a mother on a mission.”

Karen, Michael and her other son, 29-year-old Brian, are protesting this week to remind the candidates and delegates of the needs of the disabled — and to put a real face on the impact on the potential cuts and changes to Medicaid that Mitt Romney and Paul Ryan have proposed.

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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.

Click HERE or on the image below to read more…


Whittier mom trying to find cure for daughter’s disease

August 25, 2012

Whittier Daily News | August 24, 2012 | By Sandra Molina

WHITTIER – Jaclyn Davis first heard the words, “spinal muscular atrophy” in July 2010.

Her daughter Isabella Joy, who prefers to be called Bell, was visiting a neurologist, when he told the young mom his diagnosis.

“The neurologist sent me to a geneticist to have yet more blood work done,” Davis said. “On August 29th of 2011, just two months before Bell’s second birthday, I received the devastating news that the blood work confirmed she was positive for SMA.”

Spinal muscular atrophy, the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

There are certain moments in people’s lives that carry great significance.

For Davis, 24, this was one of them.

“I remember their words telling me that most SMA children don’t live past two years of age,” she said. “I though to myself, `well, she’s almost two, and she seems so healthy.”‘

Click HERE or on the image below to read more…


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.


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