Child’S Diagnosis Of Cystic Fibrosis Leads Grandmother To Help Raise Research Money

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Jane Henderson with her grandson, Zach. Henderson organized Payson’s first Great Strides Taking Steps to Cure Cystic Fibrosis walk, which raised more than $2,600 for cystic fibrosis research.

If Jane Henderson’s grandson Zach had been born 50 years earlier, doctors would have told his parents he would likely not live beyond his childhood. But today, with improved medications and treatments for cystic fibrosis, Zach is expected to live well beyond that.

When Zach was born, however, the Henderson family knew little about the inherited disorder. Since no one in either side of the family had ever been diagnosed, the family did not know they were carriers of the recessive gene.

It was quite a shock to everyone when doctors announced that Zach had the disorder at 14 months.

But the family’s confusion and disbelief was short-lived, within a year, Henderson was on the national board of the Cystic Fibrosis Foundation and Zach’s parents were treating Zach for his lung infections and learning to alter their lives so Zach could live the best, most fulfilling life.

On Saturday, Oct. 2, some 30 walkers participated in Payson’s first Great Strides Taking Steps to Cure Cystic Fibrosis walk. Henderson, who organized the walk, said more than $2,600 was raised for cystic fibrosis research and for a first-time event that is “wonderful.”

“I thank the community and the businesses for all their support,” she said.

Donations are still being accepted for the walk through December. Visit, www.cff.org/

great_strides and select the “Arizona Chapter” from the drop down menu.

“Any little amount you can give is appreciated, every little bit helps,” she said.

As many as 10 million people carry the recessive gene for cystic fibrosis.

A child is only born with the genetic disease when two carriers meet; however, there is only a 25 percent chance a child will inherit the disease from two carriers.

Today, some 30,000 Americans live with the disorder, 70,000 worldwide, Henderson said.

Henderson’s family suspected something was wrong with Zach soon after he was born.

According to the Cystic Fibrosis Foundation, people with CF have a variety of symptoms, including: salty-tasting skin, persistent coughing, at times with phlegm, lung infections, wheezing or shortness of breath, poor growth/ weight gain and greasy, bulky stools or difficulty in bowel movements.

Sticky mucus is the biggest problem, she said. Zach had most of the above symptoms.

“He was sick all the time,” Henderson said, “and not gaining any weight.”

Today, with regular breathing treatments, vitamins and a high fat diet, Zach is living a “normal life.”

Although most CF patients lose 2 percent of their lungs a year, from the outside it is nearly impossible to tell Zach has the disorder.

Zach plays several sports, loves Nascar and is doing extremely well in school, already speaking three languages, she said.

Henderson said Zach’s parents are true heroes.

“They have sacrificed everything for him,” she said. “They have to get up in the middle of the night for breathing treatments with him, but they never complain.”

Supporters

Henderson thanked the Pink Ladies from the Mogollon Health Alliance Auxiliary, Safeway, Walmart, Payson Jewelers, Chase Bank, the Wireless Store, William and Darlene at Lemon Tree Salon, Mazatzal Hotel & Casino, Western Village, Nails by Christina at the Green Mountain Emporium, Rim Country Rotary Club, Ace Hardware, Miller Autoworks, Peggy’s Payson Place, Payson Day Spa, KMOG Radio, Payson High School Key Club and all the other volunteers and walkers for their support during the walk at Green Valley Park.

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