Growing up with cystic fibrosis a way of life for two sisters

May 04, 2008 04:41 pm

— ASHTABULA TOWNSHIP — Eight-year-old Abby Reed’s golden hair curled into humidity-set ringlets Saturday, her broad smile happy no matter the weather.
Joking with friends and staying an independent distance from her mother, sister Winnie Reed, 9, sloshed through puddles, her long brown ponytail dripping and her shoes soaked.
The girls, Winnie so tall and Abby so petite, share more than just a love of Hannah Montana: The sisters are both living with cystic fibrosis.
Cystic fibrosis is a hereditary disease that affects the mucus glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure, the Cystic Fibrosis Foundation reports.
There is no cure for cystic fibrosis, and most individuals with cystic fibrosis die in their 20s and 30s from lung failure. Cystic fibrosis is one of the most common life-shortening, childhood-onset inherited diseases, the foundation reports.
“You know, we say the girls are living with cystic fibrosis,” mom Jonna Reed said. “This isn’t a fight for them, we aren’t fighting it. The girls take their medication and their treatments and we deal with it. This is all they have ever known. This is their normal.”
The Reed family lives in Madison Township.
The girls were both diagnosed with cystic fibrosis as babies. Now they will share the disease as they grow up. Abby and Winnie are each affected differently by cystic fibrosis, one sister has breathing issues, the other suffers from intestinal pain.
“It is hard sometimes,” Winnie said. “I get tired and I don’t like that.”
The girls were the inspiration behind Reeds Runners, a group of Madison Red Bird Elementary students, teachers, administrators and parents who walked in the rain at the Cystic Fibrosis Walk Saturday morning.
The walk was punctuated by gloomy weather and the absence of one very important person — husband and father David Reed died Christmas Eve of kidney failure.
“We both carried the cystic fibrosis gene and didn’t know it. He wanted his girls to be healthy and happy,” Jonna Reed said through tears she has learned to contain.
A bubbly girl with energy to burn, Abby said she is glad to have friends who support a cure for cystic fibrosis.
“I am really happy and excited that so many people came today to be with us,” Abby said. “I know they love us.”
Jonna said she and the girls, who live healthy lives on maintenance medication, will keep on supporting a cure, thinking about hope and cherishing every moment together.
“You think you have to go through this all by yourself, but you don’t,” Jonna Reed said. “The people around you become your family and your support.”

Photos

THE REED family's participation in a benefit walk to fight Cystic Fibrosis Saturday went beyond the normal sympathy for another's condition. Abby Reed (left), 8, and her sister Winnie, 9, both of whom suffer from the disease, walked in the event with their mother Jonna Reed at Lake Shore Park in Ashtabula Township. WARREN DILLAWAY