Walk to aid cystic fibrosis
PRESCOTT VALLEY - When doctors told Shanti Rade in June that her 7-month-old son Cooper had cystic fibrosis she didn't know what to think.
"I had no clue what cystic fibrosis was," Shanti said.
She quickly learned it's a genetic disease that causes thick mucus that sticks in the lungs, causing breathing problems, and clogs the digestive tract so that it can't break down food into the nutrients the body needs.
When Cooper was born he had trouble gaining weight. Finally he started losing weight. That's when their family doctor sent him to Yavapai Regional Medical Center. From there a helicopter airlifted him to Flagstaff.
"We were pretty freaked out," Shanti said.
After a few days in Flagstaff, the doctors gave the family the diagnosis and stabilized Cooper's dangerously low sodium levels. From Flagstaff, the family's next stop was Phoenix Children's Hospital because it has a cystic fibrosis center, Shanti said.
Shanti and her husband Cory own Whipstone Farm in Paulden just north of Chino Valley where they grow vegetables to sell at area farmer's markets.
"The farm was going full swing," Shanti said.
Thanks to friends who brought food and helped harvest crops, the Rades got through those first fearsome months of learning about cystic fibrosis and how to care for their son.
They feed him special tablets when he eats to help him break down his digestive enzymes so he gets the nutrients his body needs. Twice a day they give him breathing treatments on a special machine and pound on his tiny chest to loosen the mucus.
He may die before his parents do. It's a fearful thought that Shanti lives with every day.
Her hope is that scientists will find a cure.
It's very possible they will, given enough money to do the genetic research needed. They need to find a way to replace the defective gene that causes cystic fibrosis.
That's why Shanti is walking with a team of eight friends in today's Great Strides Cystic Fibrosis Walk beginning at 8 a.m. at Granite Creek Park, 554 N. Sixth St., Prescott.
Her goal is to raise thousands of dollars to help the Cystic Fibrosis Foundation search for a cure. She says that what she likes most about the foundation is that 90 cents of every dollar raised goes directly to support research, care and education. The rest covers the organization's administrative costs.
People may donate by logging onto the Cystic Fibrosis Foundation website at www.cff.org and then clicking on Great Strides. When they fill in the "find a walker" information, the website will lead them to the donation site for the walkers.
Because the lung capacity of children with cystic fibrosis declines over time, Shanti and Cory wonder what the future will bring.
Shanti admits she's afraid.
Her husband Cory - ever the optimist - says, "We have him right now, that's the best we can do."
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