1 to 4 children
Per 1 million are affected by addison's disease
Marion girl diagnosed at Stead Family Children’s Hospital with rare condition
Kid Captain Charley Rasmussen receiving treatment for Addison’s disease
Charley Rasmussen was excited to start kindergarten in 2017. But her excitement dwindled when she began having frequent stomachaches, a sore throat, and exhaustion – and lost 20 pounds in one month alone.
Her parents, Becky and Herb, initially were told the symptoms might be caused by separation anxiety. But she suffered from uncontrollable pain, sometimes causing her to wake in the middle of the night screaming. For months, they searched for answers while Charley’s health continued to decline.
“They were both born healthy,” Becky says of Charley and her twin sister, Sydney. “But for a month straight when school started, Charley threw up every single day, so we just knew something wasn’t right.”
After visits to walk-in clinics, her primary care doctor, and a local hospital failed to provide answers, Charley was referred to the gastroenterology department at University of Iowa Health Care Stead Family Children’s Hospital that fall.
“We left after the appointment and were on the way home, and she threw up again,” Becky says. “I turned around and called them and said, ‘We are coming back.’”
Charley was admitted to the hospital, where her care team continued searching for answers.
Finding an answer
When Charley continued having symptoms in January 2018, her primary care physician continued to test her for a variety of conditions. When he tested her for hypothyroidism and determined she had elevated thyroid-stimulating hormone (TSH) levels, he again referred Charley to the endocrinology department at Stead Family Children’s Hospital.
She was immediately seen in pediatric endocrinology by Liuska Pesce, MD, who recommended more tests. Once the appointment ended, Becky received a call from Dr. Pesce.
“She said, ‘I think we figured it out,’” she recalls. “It’s Addison’s disease.”
Addison’s disease, a rare condition in which the body does not make enough of certain hormones, can be life-threatening without treatment. Also known as primary adrenal insufficiency, the adrenal glands make too little of the hormones cortisol or aldosterone.
The disease is thought to affect just 100 to 140 out of every 1 million people, and is even more rare in children, affecting an estimated 1 to 4 per 1 million children.
“It was great to have an answer,” Becky says. “We had a way to at least move forward.”
Piecing together the puzzle
Becky remembers seeing a chart that showed the stages of Addison’s disease and could finally look back to put the puzzle pieces together.
For example, Charley says she often craved saltine crackers and ham — something the family later learned could be connected to Addison’s disease, which can cause salt cravings.
Without treatment, subsequent stages could eventually turn to strokes and a heart attack, Becky says.
While Addison’s disease has no cure, Charley takes steroid medication three times daily to replace cortisol her body does not produce. Becky has only found one other person with Addison’s disease in the area, a teacher who was diagnosed after Charley was.
For Becky, the diagnosis helped explain months of symptoms that had been difficult to understand.
“I had never heard of it before and never knew anyone with it,” Becky says.
Looking to the future
The medication has led to other health issues, such as high blood pressure, so Charley regularly sees hospital specialists as she copes with ongoing abdominal pain and other symptoms.
“I love the hospital,” Charley says, citing activities with Child Life specialists when she was younger. “I don’t want to go, but it’s not scary.”
"Without Stead Family Children’s Hospital, I do not know if my daughter would be here today. I just feel like they are always looking out for her best interests, not just endocrine, but her overall health."
Becky Rasmussen
Charley's mom
Now 14 and a freshman in high school, the Marion teen stays active in softball, volleyball, swimming, and basketball. She also enjoys baking and cooking, writing poetry, and babysitting her cousins. Someday, she hopes to work in a hospital, possibly in pediatrics.
Charley is interested in spreading the word about Addison’s disease and has even done a podcast on the subject for her school to help educate others.
“She always wants to help others,” Becky says. “She has a kind heart and is full of life and energy.”
Charley’s parents say they remain grateful for the unwavering support from her care team.
“Without Stead Family Children’s Hospital, I do not know if my daughter would be here today,” Becky says. “I just feel like they are always looking out for her best interests, not just endocrine, but her overall health.”
Kid Captain Hall of Fame
Each football season, we welcome 12 unforgettable patients into our Kid Captain Hall of Fame. Explore our four most recent stories.
Meet Kid Captain Kaelyn O’Brien
When Kaelyn O’Brien couldn’t walk down the hallway and her speech became slurred one morning, her parents thought their 11-year-old daughter was having a stroke.
Meet Kid Captain JJ Ward
JJ Ward underwent emergency bowel surgery less than a day after he was born. Diagnosed with meconium ileus, surgeons removed one-third of his small intestine and inserted a temporary feeding tube. The obstruction can serve as a sign of cystic fibrosis, and tests confirmed that JJ had the disease.
Meet Kid Captain Eliana Gaul
Roger and Ashley Gaul were planning an afternoon of fun following a doctor’s appointment and ultrasound. But their joy quickly turned to heartache: Prenatal tests indicated their baby, Eliana, would be born with spina bifida, a condition in which the spinal column and membranes around the spinal cord don’t close completely during the first month of pregnancy.
Meet Kid Captain Lily Lee
At 14 months old, Lily Lee still wasn’t walking. As she began to progressively weaken, tests at her local hospital showed nothing unusual. Following a referral to Stead Family Children’s Hospital, Lily was diagnosed with spinal muscular atrophy, a rare disease that weakens her muscles over time.
Patient Stories
