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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Local family works to meet daughter’s needs

July 21, 2011

Local family works to meet daughter’s needs

New Richmond News | July 20, 2011 | By Jackie Grumish

Gabbie Bark was given just six months to live.

Thankfully that first diagnosis proved wrong, due to a general misunderstanding about Spinal Muscular Atrophy (SMA). The 2-year-old’s future is much brighter than first suspected.

That doesn’t mean her current health status and her future won’t be filled with challenges.

An inherited disease, SMA leads to the loss of muscle and motor function. The rare disease is the result of the absence of or defect in the individual’s Survival Motor Neuron 1 gene.

“One in 40 people are carriers,” explained Gabbie’s dad, Jamie. “Both me and my wife (Jackie) are carriers, so from a numbers standpoint it’s pretty rare to have both parents as carriers.”

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Heart, soul outshine Janesville Craig grad’s wheelchair

June 12, 2011

Heart, soul outshine Janesville Craig grad’s wheelchair

GazetteXtra.com | June 11, 2011 | By Frank Schultz

JANESVILLE — Talk with Kyle Knopes for a while and you soon forget the wheelchair and the condition that’s robbing him of his strength.

Knopes’ face radiates a kind smile and a mature intelligence. In the end, that’s what you remember about him.

It wasn’t supposed to be this way. He was supposed to live only eight to 12 years. He’s 18, now, and graduated Friday with the rest of the Craig High School Class of 2011.

Knopes suffers from spinal muscular atrophy. The condition doesn’t allow his body to produce new muscle. Over time, he loses strength.

Gazette readers might remember him as the child who went to China in 2009 with the help of local fundraisers to get injections of umbilical-cord stem cells.

After his first injection, he was able to roll from his back to his side, something he hadn’t done since he was 6, he said.

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Donated van to help family

May 31, 2011

Donated van to help family

Beloit Daily News | May 27, 2011 | By Rob Baxter

Listen closely and you’ll hear Keyonah (pronounced Key-on-uh) Spencer, 4, utter the words “Ace” and “Goodwill.” Her mom, Jenni Spencer, says those are her two favorite stores to go to in Beloit.

For many families, a trip to Ace to get flowering plants or a new tool or a rummage sale type, treasure hunt at Goodwill takes only minutes. For Keyonah, it’s a bit more daunting.

Keyonah was diagnosed with Spinal Muscular Atrophy with respiratory distress when she was 3 months old.. At 9 months, she was placed on a ventilator to save her life. Due to the degenerative nature of the disease, Keyonah is confined to a wheelchair and unable to hold her head up without support. Her muscles are so weak she cannot breath on her own.

“She is getting really big for my car and getting her in and out of there has become very difficult,” Jenni said. “This vehicle will allow us to do that. I don’t know if we would be able to go anywhere otherwise.”

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Many take steps to help Kherington

May 16, 2011

Many take steps to help Kherington

Beloit Daily News | May 13, 2011 | By Rob Baxter

Morgan Elementary staff and students donned walking shoes and put their best feet forward this week in an effort to help a 20-month-old child who is battling a crippling childhood disease.

Melissa Shippee, a teacher at the school, was overcome with emotion Thursday when friend and fellow educator Sarah LaMaster told Shippee that 81 people had participated in a walk-a-thon at the school a day earlier and nearly $2,400 was raised. More money was still coming in Thursday afternoon.

“It has just been amazing,” said Shippee, whose daughter, Kherington, was diagnosed with Spinal Muscular Dystrophy. “This and the event (last month) at Atlanta Bread Company and our PTA’s efforts have just been amazing. It has brought everyone together in ways I could not have imagined.”

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Sisters become ‘princesses’ at Disney World

December 24, 2010

Sisters become ‘princesses’ at Disney World

Herald Times Reporter | December 24, 2010 | By Suzanne Weiss

MANITOWOC — Sarah and Madison Wright are back in the land of ice and snow.

But the Manitowoc sisters have warm memories of their recent Make-A-Wish Foundation trip to Disney World and other attractions in Orlando, Fla., where they were treated like princesses.

Accompanied by their parents, Melissa and Ron Wright, and five private-duty nurses, the girls left Manitowoc on Dec. 5 and returned Tuesday. A story in the Herald Times Reporter on Dec. 6 detailed how the foundation granted the wishes of Sarah, 12, and Madison, 6, who have spinal muscular atrophy, a genetic disease in which muscle control and movement progressively weaken.

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Make-A-Wish fulfills Manitowoc sisters’ dream

December 6, 2010

Make-A-Wish fulfills Manitowoc sisters’ dream

Herald Times | December 7, 2010 | By Sarah Kloepping

MANITOWOC – Sarah and Madison Wright dreamed of becoming princesses.

Through the Make-A-Wish Foundation, an organization that gives terminally ill children something they’ve always wanted, their wish to go to Disney World is being granted.

With about 20 friends and family members waving farewell Sunday, 12-year-old Sarah and 6-year-old Madison left Manitowoc for Florida to spend two weeks being treated like royalty.

Joining them are their parents, Ron and Melissa; 15-year-old sister, Hailey; 17-year-old Mercedez Hinds-Faust, who legally became part of the family this year; and five private-duty nurses – Roxanne Markham, Bonnie Sell, Kathryn Endries, Donna Whitehead and James Tobin.

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