FUNDRAISERS: Suz Cox, diagnosed with ALS in mid-September, has support of her Queen Creek family, including her husband, Larry, right. Cox and other family members will be taking part in the Walk to D’Feet ALS on Saturday.

Tim Hacker, Tribune
Fight against ALS is a Q.C. family affair
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Sarah J. Boggan, Tribune


The Cox family loves to laugh. But when Queen Creek mother and wife Suz Cox was diagnosed with Lou Gehrig’s disease, or ALS, in September, things got decidedly less lighthearted.

“It was the day my world stopped,” said Suz’s daughter, Katrina DeVinny. “When we were growing up, we were always running 10Ks and hiking the Grand Canyon. Mom was living a healthy lifestyle before it was fashionable. That’s why this is horribly ironic.”

ALS, amyotrophic lateral sclerosis, is a progressive and fatal neurodegenerative disease. It affects nerve cells in the brain and spinal cord.

Suz first lost her ability to speak clearly because of a paralyzed vocal chord. She is also fed through a tube in her stomach — but unlike some ALS patients, she can walk and move relatively unhindered. It took almost a year to diagnose the disease for which there is no cure.

“I figured God wanted me to hush and listen,” Cox said, enjoying a laugh with her family. She said the worst part of ALS is that she can’t pucker her lips to kiss husband Larry.

When discussing her diagnosis, the family credits their unwavering faith and their sense of humor in helping them see things through.

They also talk about the resource they have in the Arizona Chapter of the ALS Association — a national nonprofit health organization dedicated to leading the fight against ALS and to helping families.

The financial cost to families with a member affected by ALS can climb to more than $200,000 a year.

Suz Cox, who retired as a neonatal intensive care nurse the day she was diagnosed, uses expensive equipment to stay alive and treat her ailment. Her family has nicknamed the devices the “Jello Jiggler Jacket,” which loosens phlegm in her chest, and the “Speak and Spell,” a computerized box that speaks what Suz types in it.

Larry Cox said his family is lucky to have good insurance but couldn’t imagine purchasing the needed equipment and care without it — it costs them thousands in addition to what insurance pays. That’s why they’re participating in the ALS Association’s annual Walk to D’Feet ALS — to help others facing the disease.

The walk on Saturday raises money for patient service programs and research. It is open to the public, with no registration fee. According to the Arizona Chapter of the ALS Association, there are already more than 70 teams and 350 walkers registered.

Last year, the group saw 1,200 walkers who raised more than $275,000. Organizers expect to top that this year.

Suz Cox and her family will be participating with a team named “Suz’s Stompers.” With more than 30 walkers, they have nearly tripled their team goal of raising $1,500.

“Our team motto is: We beat our feet to defeat ALS,” Larry Cox said. “This is a cause worth fighting for.”

Suz Cox said the money raised will help with research not only on ALS but also Parkinson’s disease and muscular dystrophy — medically similar diseases.

“The next dollar we raise could be the one that cracks this,” DeVinny said. “This can affect anyone. Every 90 minutes someone is diagnosed.”

The Walk to D’Feet ALS
When: 9 a.m. Jan. 19
Where: Tempe Town Lake’s South Beach Park, 54 W. Rio Salado Parkway
Information: http://walkaz.alsa.org or (602) 297-3800

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