Alaskan families struggle with cystic fibrosis

ANCHORAGE, Alaska —  It's a disease not too many people are familiar with, but cystic fibrosis affects more than 60 families across Alaska.

Ask any kid and they'll tell you how much they love a summer go-cart ride. Sisters Tre and Nadine are no different, but when it comes to their health, Tre and Nadine aren't like most other children. Both are fighting a terrible disease.

Lacinda Scruggs is the grandmother of the girls and, for the most part, their primary caregiver.

“The girl know its meds, meds, meds, treatments, treatments, treatments, but you still have to fit life in and have fun so that’s what we try to do,” said Scruggs.

Tre and Nadine have cystic fibrosis.

According to the Cystic Fibrosis Foundation, cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States.

“It’s a disorder in which the cells, that either cover or line the parts of the body, have abnormal secretions,” said Anchorage pulmonologist Dr. Dion Roberts.

This, Roberts said, leads to a host of consequences.

“For young children, their basic problem is g.i. distress. Their gassy, colicky sometimes, they often have heartburn and they don't gain weight well,” said Roberts.

According to Roberts the disease is almost always fatal.

Coughing, sickness, colds, and trouble breathing are daily struggles. To break up the mucus the girls wear a vest that shakes it free in their lungs.

“Sometimes I'm just like ‘why do I have to have CF? Why does this have to be me,’ but I know I can get through it,” said Nadine Burdett.

 “You are in the hospital a lot, like every three months,” Tre Burdett said.

Research and new treatments are keeping cystic fibrosis patients alive for decades longer than back in the 1970s, where a child may only live to age six or seven. Much of that research has been funded by the Cystic Fibrosis Foundation.

Roberts said the foundation has been a model around the world for medical research non-profits.

The foundation in Anchorage is part of 150 around the nation. Care that is not typically covered by insurance is covered at clinic, like a nutritionist and respiratory therapist.

 “I'm hopeful and confident there are good things coming and they will far outlive me and I'll be babysitting their kids, I'm sure,” said Scruggs.

The Lost Lake Trail Run is set for August 22 and proceeds from the run are going to help find a cure for cystic fibrosis. While registration for the run is closed, donations are still be taken online.

Contact Megan Baldino at mbaldino@ktuu.com