Benefit scheduled for New Brighton girl battling cystic fibrosis

Fundraiser is June 23 in Fridley

A benefit is planned for a 10-year-old girl with a strong spirit who has cystic fibrosis.

Gracelyn VanGorden was diagnosed with the genetic disorder when she was two years old. It affects the lungs and digestive system and is inherited.

Gracelyn’s mother, Linzi, said her daughter was coughing a lot and doctors at first thought she had pneumonia, but treatment wasn’t working. They were sent to Children’s Hospital in Minneapolis and were told Gracelyn had either asthma or cystic fibrosis.

A sweat test was done, which measures the amount of chloride, or salt, in sweat. Children with cystic fibrosis can have two to five times the normal amount of chloride in their sweat.

The test confirmed that Gracelyn had cystic fibrosis.

A defective gene, which Gracelyn inherited from both of her parents, and its protein product cause the body to produce thick, sticky mucus that clogs the lungs. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Living with cystic fibrosis

“She’s just a normal kid on the outside,” Linzi said. “The disease controls not only her life, but it controls everything we do, where we can go, how long we can be there.”

Gracelyn takes enzymes to digest her food and wears a vest machine that shakes her lungs and loosens up the mucus, which Linzi said is as thick as peanut butter.

Gracelyn coughs frequently and gets tired easily. She can’t ride her bike anymore, walk long distances or walk up big flights of stairs. Her lungs are only working at about 20 percent. The lung function of an average 10-year-old with cystic fibrosis is between 80 to 100 percent.

“They said she is significantly sick compared to most,” Linzi said.

“She has a port in her chest and a feeding tube in her tummy,” she said. “We administer IV meds at home for her around the clock, between every six to eight hours.”

If it wasn’t for her port, Gracelyn would need to go to the hospital every time she is on IV medication.

At night, she uses a feeding tube that gives her extra calories; her lungs burn so many calories because they’re working so hard, Linzi said.

Gracelyn will be a fifth-grader next year at Bel Air Elementary in New Brighton. Her favorite subject in school is reading.

“She has read more books than I ever have in my life,” Linzi said.

Gracelyn was home schooled before attending Bel Air this past school year, at her request.

The VanGorden family at a Twins game last fall. Gracelyn, right, has cystic fibrosis and will be put on a lung transplant waiting list in Houston, Texas. (Submitted photo)
The VanGorden family at a Twins game last fall. Gracelyn, right, has cystic fibrosis and will be put on a lung transplant waiting list in Houston, Texas. (Submitted photo)

“She always just wins over everybody’s heart. She’s so kind and caring and very, very independent,” Linzi said.

“She’s probably had the worst year medically, but we’ve never seen her so happy at school, at Bel Air, and just growing up. She has, of course, bad days, but overall is very happy.”

Waiting for new lungs

On June 28, Gracelyn and her family are temporarily moving to Houston, Texas, where Gracelyn will be put on a waiting list for a new set of lungs. Her mother and father, Sonny, will be with her, along with her two siblings Vince, 7, and Isabelle, 6. Linzi and Sonny are quitting their jobs.

They were referred to the Children’s Hospital in Houston, which is one of three places in the United States that perform lung transplants on children. The other two hospitals are in Philadelphia and St. Louis.

The family bought a 35-foot RV and will stay at an RV resort, which is five miles from the hospital. Linzi said a lot of medical people stay at the resort, which offers a free shuttle to the hospital. At any point, they could be called and told a lung transplant is available, so they will have a pager and cell phones with them at all times. They must always be within two hours of the hospital.

On average, a person remains on the waiting list at Houston for about three months, Linzi said. After the surgery, Gracelyn will stay in the hospital for about two weeks and will stay for three months for weekly, routine testing. After that, she will need to return once a month or every two months for check-ups.

Benefit on Sunday

A benefit for Gracelyn and her family will be noon to 4 p.m. Sunday, June 23, at Marino’s, 7365 Old Central Ave. NE in Fridley. There will be lunch, a bake sale, a craft sale and a silent auction. Cost is $20 for adults and $5 for kids under 12 years old. RSVPs are appreciated. Email [email protected] or call 952-486-1372.

The future 

Linzi said she hopes that Gracelyn gets through the surgery OK and hopes for the day when she no longer has to wear her vest machine, during which treatments last 30 minutes.

“Just to see her life without having to do that, I just can’t wait for that…to have her energy back, gain weight, have her ride her bike,” Linzi said. “I just want her to be a normal kid and be able to run around with her brother and sister and ride her bike and not be in pain.”

Before the VanGorden family leaves for Houston, the New Brighton Department of Public Safety will present Gracelyn with a hockey jersey. Each year the department plays in an annual hockey tournament that raises money for the fight against cystic fibrosis. The send off will also include a fire truck or a police car.

Linzi said the support from everyone has been wonderful and more than she could have ever expected.

Director of Public Safety Bob Jacobson recently met Linzi after she contacted the city about parking her RV on the street overnight before heading to Texas.

“What impressed me is that Linzi, despite the challenges faced, has the strength and wherewithal to keep pushing ahead, removing any obstacles in her way in a straightforward and purposeful manner, and keep her eye on the end result, which is to get her daughter lungs.

“I am quite frankly in awe of Linzi and of Gracelyn who for a child of 10 should not have to face such difficult circumstances. We wish them only the very best in their travels and in Gracelyn’s potential transplant. I only regret that I did not meet the family before this crisis. Our community is better for having them living among us. I look forward to their return.”

To donate to the Gracelyn VanGorden Fund, visit any Wells Fargo bank. Cash or check donations will be accepted at the benefit. Donations can also be mailed to Gracelyn VanGorden, 1898 Livingston Ave., West St. Paul, MN, 55118.

Contact Kassie Petermann at [email protected]