RANDOLPH — Allegra Freber is in many ways a typical third grader. She likes to write, draw, run, ride her bike, swim and take care of her pet turtle, Willie.
When she grows up, she wants to be either a waitress, a chef or a scientist. Although she likes her periodic visits to the hospital, she doesn’t want to be a doctor.
She doesn’t like seeing blood.
The Randolph 9-year-old also has cystic fibrosis, a hereditary disease that affects the lungs and digestive system. The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas. Cystic fibrosis (CF) can be life-threatening, and people with the condition tend to have a shorter-than-normal life span.
(Allegra bristles when she hears that last bit, determined to beat the odds).
According to Samantha Freber, Allegra’s mom, odds of transmission to a baby are extremely low. Both the mother and the father have to have the gene, and even then the likelihood of passing it on to a child is only 25 percent.
“Only one in 30 people is a carrier,” Samantha Freber said. “You can get a test done when you’re pregnant, but we didn’t.
“Allegra was diagnosed right at birth. When she came out, she was vomiting, and they discovered that she had a twisted intestine. That’s a big factor in diagnosing CF, along with the other blood and other tests they performed.”
Samantha has enjoyed writing in her journal and compositing poems since she and her husband Andy were attending classes at Dodgeland High School in Juneau. She did so again while both were waiting during the surgery when Allegra was two days old. The procedure removed the twisted section of intestine and rejoined what was healthy tissue. Then came 44 days of follow-up.
“I just sat there and started writing poems, which is what I kind of do for therapy,” Freber said. “People had said I should share these poems, and at first I created my own little book through Walgreens. Then I decided to do it officially.”
The book, “Allegra’s Hope,” is designed to help all who experience or observe CF — not by becoming a best-seller, but by helping people to understand the disease and how it impacts the people who suffer from it.
“Most people don’t know that Allegra is different than anyone else,” Andy Freber said. “Apart from the medicine she has to take she does what any of the other kids can do.”
“And it’s good for her to do those things, but her body works five times as hard,” Samantha Freber said. “So she gets tired faster.”
It’s a challenge for her parents as well, but they don’t mind.
“There’s a lot that has to be done that most other kids don’t have to worry about, and a lot that has to be planned, but it’s normal for us,” Andy said.
Although Allegra faces daily challenges, she said she’s happy almost all the time.
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Mom knows she gets irritated when she has to wear her therapy vest, and when she’s last in line to eat because of taking her medication.
“Sometimes I get mad,” Allegra agreed.
Allegra attends Cambria-Friesland Elementary School, largely because of the day care it provides between school getting out and her parents’ returns from work. The school also supports efforts to increase awareness and to raise funds for CF research.
Samantha is an administrative assistant at a facility for developmentally disabled individuals in Madison. Andy is a manager for an installation company for Dish Network, working out of Green Bay.
“I don’t have a job yet,” Allegra said.
Samantha is optimistic that day will come.
“We do believe there will be a cure soon,” Samantha said. “Now kids can live a whole lot longer.”
Allegra goes to American Family Children’s Hospital every three months for checkups, breathing tests and more. With each visit, she is treated like the phenomenon she is, welcomed by the professionals who have also grown to know and love her.
“I like going there,” Allegra said. “They’re hilarious.”
“And they really care,” Samantha added. “Some people are really, really, sick and are hospitalized right off the bat for weeks at a time. Allegra is very healthy.”
Allegra has progressed nicely overall, although she must wear a vibrating vest for at least a half-hour twice a day to keep the mucus moving.
“She can also jump on the trampoline, which is just as good if not better,” Samantha said.
In Allegra’s case, nutrients are not absorbed into her body without ingesting enzymes to do the job. She must take them every time she eats — whether it’s for a meal or for a snack.
“Getting her to eat can be a struggle when she’s not hungry,” Samantha said.
Allegra also struggles to keep her weight up. According to Samantha, the more stable her daughter’s weight, the better her lung function.
Regarding her status as a hero in soon-to-be two books, Allegra said, “My mind is blown. It’s exciting to have all this stuff going on.”