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Devastated families want cure for ALS

Published: Monday, March 31, 2014 1:15 a.m. CDT
Caption
(Debra Case/Special to SVM)
Megan Shannon of Sterling and her 1-year-old son, Jonathan, remember happier times as they browse through a photo book. The toddler pointed to images of his late father, Josh, and said "Daddy." The 32-year-old died in June, after a 6-month battle with amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s Disease.
Caption
(Photo submitted)
Doug Payne of Amboy spends time with two of his biggest supporters (from left) Connie Becker, his cousin and an ALS advocate, and his wife, Cindi, in September at the annual ALS Walk for Life in Chicago. Doug Payne was diagnosed with the terminal muscle disease 2 years ago. He and his family help raise money for medical research.
Caption
(Photo submitted)
Team "Payne in the ALS," comprised of the Payne family, with members in Amboy and the surrounding area, gathers to walk at the annual ALS Walk for Life in September at Soldier Field in Chicago. The family has lost 19 loved ones to the disease. Three others are battling ALS today.
Caption
(Photo submitted)
Megan and Josh Shannon enjoy a Chicago Cubs game with their little boy, Jonathan. It was their last family trip. Josh passed away from ALS in June.
Caption
(Debra Case/Special to SVM)
Megan Shannon of Sterling and her 1-year-old son, Jonathan, remember happier times as they browse through a photo book. The toddler pointed to images of his late father, Josh, and said "Daddy." The 32-year-old died in June, after a 6-month battle with amyotrophic lateral sclerosis, known as ALS or Lou Gehrig’s Disease.

STERLING – “Till death do us part.”

Megan Wilcox and Joshua ‘Josh’ Shannon made that promise on a chilly October day in 2010. They never knew death would come so soon.

The 33-year-old Sterling woman lost her husband in June to amyotrophic lateral sclerosis, known as ALS, or Lou Gehrig’s Disease.

The Paynes of Amboy understand her heartache. The disease has killed 19 family members. Three others are battling ALS today.

Both families want to raise awareness and money for research. They share the same dream – a cure.

‘He was a wonderful dad’

Megan started dating Josh in March 2009, after moving next door to him in Rock Falls. She adored his smile, personality, and love for family, she said.

After a year of marriage, they had a son, Jonathan.

“[Josh] was beaming,” Megan said. “He was so excited. He always wanted to be a dad – definitely wanted a boy.”

Daddy, a huge sports fan, and baby loved to play with a ball together.

“We were very happy,” Megan said. “… He was a wonderful dad.”

Their perfect world soon fell apart.

Josh could not clip his fingernails with his left hand. Must be a pinched nerve, the couple thought, but medical tests suggested something much worse. Experts at Northwestern Memorial Hospital in Chicago diagnosed his ALS on Dec. 12, 2012.

ALS affects nerve cells in the brain and spinal cord, according to the ALS Association. Patients lose the ability to initiate and control muscle movement, and can become totally paralyzed.

ALS is terminal. There is no cure.

After the appointment, tears raced down the couple’s cheeks.

“We were both scared,” Megan said. “He was never scared of dying – never. He was scared for his family because they would be the ones left behind.”

Making the most of their time, the Shannons vacationed in Florida and later went to a Chicago Cubs game.

“That was the last family trip,” Megan said.

‘I had to be strong’

As the disease progressed, Josh grew weaker and weaker. Before long, he was confined to his chair and wheelchair. Unable to lift boxes, he took medical leave from his workplace, Walmart Distribution Center.

Megan worked full time at Sterling Federal bank to support her family. She spent remaining hours chasing a 1-year-old and trying to make Josh comfortable – an impossible task.

“People with ALS, they don’t get comfortable,” she said. “You have to constantly move their hands [and] their legs.”

Josh, 32, developed pneumonia in June – a sickness an ALS patient could not fight. He went to the emergency room via ambulance. Unable to talk, or breathe without a machine, doctors respected his wishes to die at home, surrounded by family and friends.

“We knew, leaving the hospital, that it wouldn’t be long,” Megan said. “I had to be strong; I had to be strong for Josh. He was always the person that you could lean on, and he needed someone that he could lean on then.”

Most people live 3 to 5 years after a diagnosis, but Josh lived only 6 months. Saying goodbye to her husband of 2-1/2 years broke Megan’s heart.

“I wanted to be with Josh,” she said, tears flowing uncontrollably. “I didn’t want him to leave me because he was always the strong one, and I didn’t know how to exist without him.”

At Josh’s visitation, family wore jerseys of his favorite teams, Notre Dame and the Chicago Bears. Jonathan was too young to understand the events, Megan said.

“I just said, ‘Daddy’s in heaven.’”

‘He never complains’

Doug Payne, 51, of Amboy, can relate to Jonathan.

At 2 years old, he lost his father, Bill Payne, to ALS. The disease also took his grandfather, Melvin Payne; brother, Dave Payne; and uncle, Mike Payne, who all lived in Amboy; as well as other relatives.

Now, he fights the same battle.

Twitches and cramps started 7 years ago; doctors diagnosed him 2 years ago. Like Josh, he was not worried about himself.

“The first thing I thought was, ‘My wife and my family,’” he said.

Doug is married to Cindi Payne, and they have four grown children. Now in a wheelchair, he struggles with everyday tasks. Doug especially misses playing with his four grandchildren, he said.

But Doug never gives up. He still runs his business, Sauk Valley Motors, a car dealership in Dixon and Rock Falls. Doug’s positivity inspires his cousin, Connie Becker, 41, of Chicago.

“He’s the most amazing guy I know,” she said. “He never complains. He’s just so strong.”

There’s a reason for that, Doug said: Family.

“That’s my life.”

Doug is not alone. Two of his cousins, who did not want to be named, also have ALS. One was recently diagnosed.

‘They have so much to live for’

ALS rarely runs in families. With 22 diagnoses, the Payned have been studied by researchers from around the world, according to Becker. They have identified the specific gene responsible.

“It is always on our minds,” Becker said, “and we always wonder who will be next.”

Formerly of Amboy, Becker is related to the Paynes on her mother’s side. Melvin also was her grandfather; Bill and Mike were her uncles; and Dave was her first cousin.

She also mentioned three great-uncles and several other cousins who died from ALS.

“We’re losing so many people that we love,” she said. “It’s just so senseless. … They have so much to live for.”

Becker has watched loved ones lose the ability to scratch itches, wipe tears, give hugs, tie shoes, walk, drive, eat, move, and breathe – things people take for granted, she said.

The minds of ALS sufferers remain alert as their bodies degenerate, she added.

“Nobody deserves this disease.”

With Becker in the bunch, ALS waged war against the wrong family. She retaliates with her favorite weapon – advocacy.

Becker serves on the planning committee for “A Toast to Life” in Chicago. The annual benefit has raised more than $350,000 for Augie’s Quest, a fundraising campaign affiliated with the ALS Division of the Muscular Dystrophy Association. All proceeds fund research for treatments and cures.

Becker and her cousin, Ashlee Gonigam of Chicago, accepted an advocacy award on behalf of the Payne family at last year’s event.

Becker also rallies for ALS walks, including the Walnut 5K Run/Walk for ALS every Fourth of July weekend and the annual Les Turner ALS Walk For Life every September in Chicago.

At both walks, team “Payne in the ALS” raises research money for ALS Therapy Development Institute.

Megan also attended the walks last year, and plans to walk again. Someday, she may organize a new fundraiser for a cure, she said.

“That’s my wish. No family should have to be put through this.”

Becker hopes a cure will be discovered in her lifetime.

“It would just mean everything,” she said tearfully. “... We just need it so badly. I can’t say that enough.”

‘I have pictures all around’

Megan said friends and family help her cope.

“I have more good days than I did, but I won’t say I’ve had great days,” she said. “The first anniversary, the first holidays were really tough without him.”

The young widow left the home she shared with Josh for a new house in Sterling. Moving was difficult, Megan said, but she needed a change. She hauled her belongings on Valentine’s Day – a good distraction.

“I didn’t even think about what day it was,” she said with a laugh.

Jonathan will turn 2 in April. He has visited the cemetery with mommy. He often looks at Josh’s picture and says, “Daddy.”

“I know he’s going to start asking questions,” Megan said, “and I’m not ready for that. But I’m also going to have him never forget who his dad was. I have pictures all around. I never put them away.”

Although their time together was short, Megan said she had no regrets about marrying Josh.

“You don’t get the kind of love that we had,” she said. “When it comes, you’ve got to take ahold of it.”

Becker said her family’s hardships have brought them closer.

When asked how they cope, she replied, “We don’t have a choice. … We just have to stay strong and keep moving forward.”

ALS events

“A Toast to Life” will be from 6 to 10 p.m. April 12 at Park West, 322 W. Armitage Ave., Chicago. The evening will include cocktails, hors d’oeuvres, a silent auction, and raffle prizes. Go to www.mdatoasttolife.com to buy tickets, become a sponsor, or make a donation.

The Walnut 5K Run/Walk for ALS will start at 8 a.m. July 5 at Bureau Valley North Junior High School, 323 S. Main St. Find the event on Facebook or contact Julie Von Holten at 815-379-2269 for more information.

ALS Walk for Life will be the weekend of Sept. 20-21 in Chicago. Details will be posted at www.lesturnerals.org at a later date.

How to help

Go to community.als.net/paynefamilyfund to make a donation to the Payne Family Fund, for research; or make checks payable to "ALS TDI" and send them to ALS Therapy Development Institute, 300 Technology Square, Suite 400, Cambridge, MA 02139.

Find "Payne in the ALS" on Facebook or contact Connie Becker at payneintheals@yahoo.com or 773-550-4059 for more ways to help.

ALS facts

Muscular Dystrophy Association, www.mda.org

* ALS can affect people of any age, but usually strikes in late middle age.

* Men are slightly more likely to develop ALS than women.

* Symptoms can include persistent weakness in a limb; difficulty speaking or swallowing; muscle shrinkage, tightness, spasms, twitches, and cramps; changes in behavior; and uncontrollable laughter and tears.

* ALS cannot be transmitted from one person to another.

* The disease is familial, or runs in the family, in only 5 to 10 percent of cases.

* Most people live 3 to 5 years after diagnosis.

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