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6-year-old to open big event: Ella Gustafson to speak at Jam the Gym

A screening test administered shortly after birth led doctors to diagnose Ella Gustafson, now 6, with cystic fibrosis. Due to the diagnosis, her parents Susan and James and the doctors realized that the disease also explained the 2½ years of health problems that Zachary, now 8, had been experiencing. Ella Gustafson will open this year’s Tim Orth Memorial Foundation event in Bird Island. Tribune photo by Tom Cherveny

BIRD ISLAND — There’s nothing unusual about calling on someone taking on big challenges to say a few words of inspiration at the start of a major public event.

The difference here is that Ella Gustafson of Renville is only 6 years old, and by her own admission not practiced at speaking before large crowds.

Her message — and affection for a certain costumed character — makes her the obvious choice to open the Tim Orth Memorial Foundation’s 19th annual Jam the Gym event March 29 in Bird Island, according to Val Serbus and Bill Neubauer of the Tim Orth Foundation. It raises funds to assist families with children facing major medical challenges.

“She’s going to be the star of the show,” said Serbus after hearing Ella read the message she intends to offer.

Ella and her 8-year-old brother Zachary have cystic fibrosis. It was described to Ella’s parents at the time of her diagnosis as a “genetically terminal disease.” Ella will be announcing her hopes of helping make possible a cure, along with introducing one of the stars of the upcoming event, the Utah Jazz’s mascot. She’s had a crush on the Jazz Bear since she first met him a few years ago at a Tim Orth Memorial Foundation event. This time the man behind the costume has promised to meet face-to-face with her.

Ella’s diagnosis of cystic fibrosis came six days after her birth. It became a rallying call for those urging mandatory screening at birth. Her older brother had not been tested.

For 2½ years, Zachary was treated for a relentless progression of health problems, from allergies and asthma to bronchitis and pneumonia. “We figured out in five minutes that not one child but two children had a genetically terminal disease,” said their mother, Susan, of Ella’s diagnosis.

Today, Ella and Zachary know challenges few others their age could imagine. Four times a day, they put on pulsating vests that press and shake their lungs to break up the thick mucus that fills them. They need special diets to keep up their stamina: The disease affects their digestive system as well as lungs.

They take a daily regimen of medicines and herbal supplements. Their father, James, said the family is on a first-name basis at the pharmacy, where they grab a shopping cart to fill on their regular visits.

Susan and James are parents to four children. Their older two children, Ayden and Hayley, are healthy in all respects. The couple had no way of knowing they carried the genes that could result in cystic fibrosis for any of their children.

Nor could they have known the many challenges that cystic fibrosis would present, or how it would change their lives. “I was always kind of a free spirit,” said Susan. “I’ve had to become structured and organized and plan, and learn everything all over.”

When the children were initially diagnosed, doctors urged the parents to seek marriage counseling due to the stresses that would be coming their way. They dismissed the advice at first. Before they signed the divorce papers in 2009, they decided to give counseling a try. It saved the marriage and made them a stronger team in meeting their children’s needs.

“Men and women are wired differently, handle things differently,” said Susan.

Now they do their best to make life as normal as possible for all of their children, making sure that Ayden and Hayley get the attention they deserve as well, said the Gustafsons.

They said Ella and Zachary attend school and enjoy the same activities as do their friends, but there is no question about the challenges they also face due to cystic fibrosis. Zachary recently spent time in a hospital due to a lung infection. The lower left lobe of his lung is scarred from infections suffered before his cystic fibrosis was diagnosed, explained Susan.

Zachary is a big Vikings fan. A couple of years ago, the Kids Wish Network made it possible for him to play catch with then-Viking Percy Harvin and meet some of his other teammates. His game of catch with Harvin even made it on the Grid Iron television show.

Ella took a liking to Vikings running back Adrian Peterson when her brother got to meet the Vikings. Due to the competition he faces, Ella’s parents may just advise the Jazz Bear to put on a little extra charm when he meets Ella at the upcoming event.

Serbus and Neubauer said they believe the parents’ story is as inspiring as their children, but Susan quickly dismissed any suggestion they were doing anything unusual. “We’re just average people. Amazing children,” she told them.

Tom Cherveny

Tom Cherveny is a regional and outdoor reporter with the West Central Tribune in Willmar, MN.

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