Anna Becket's older brother, Jack, age 3, says that she has "sister fibrosis."
He is talking about his 9-month-old sister's cystic fibrosis diagnosis, confirmed one week after she was born on June 16, 2011.
"The day I heard the possible diagnosis was the worst of my life," said Kate Becket, the children's mother.
Kate Becket, 25, Googled the disease to learn more -- something her doctors later advised against because of the inaccuracy and the changing nature of the disease.
Kate Becket began a blog, affectionately dubbed "Sister Fibrosis," to reach out to parents of newly diagnosed children.
"During that time I just wanted to know what day-to-day life was like, what happens when they are hospitalized, what are doctor appointments like, and how to cope," she said.
Kate and her husband, Alex Becket, are both York Catholic graduates and now live in Carlisle.
They did not know anyone with cystic fibrosis before, but now know they are both carriers.
In cystic fibrosis, a defective gene causes the body to produce mucus that builds up in the lungs and digestive system and makes them unable to function correctly, Kate Becket said
Bacteria builds up because of the mucus, causing frequent lung infections that will deteriorate lung function over time.
"There's so much research being done, and the very first doctor told us that what he tells us today could change tomorrow," said Kate Becket's mother, Kim Pessognelli.
A fundraiser: Pessognelli, of Springettsbury Township, came up with the idea for a unique fundraiser to help find a cure for her granddaughter and for everyone with cystic fibrosis.
Anna's Amazing Race is modeled after the TV show -- teams of all ages and skill levels will travel throughout York County to complete mental and physical challenges.
For every dollar donated to the event, 90 cents will go to the Cystic Fibrosis Foundation for research.
Anna's Amazing Race will begin at the White Oak Pavilion in Rocky Ridge Park at 1 p.m. Saturday, May 19.
Teams are encouraged to coordinate outfits and decorate their vehicles. GPS devices are permitted, and the event will be held rain or shine. Everyone is welcome to bring food for a post-race potluck dinner in the park.
Participants are asked to raise a minimum of $25 for the Cystic Fibrosis Foundation, and non-participants are welcome to donate to the cause at mycommunityevents.com.
Progess: The importance of donations is evident because of the progress being made in fighting the disease, family members said.
Earlier this year, Kate Becker said, the first drug was approved earlier this year as a cure for one cystic fibrosis mutation that accounts for 4 percent of people with the disease.
While that isn't Anna's mutation, it shows what a difference the research is making and how close researchers are to finding cures, she said.
In the meantime, Anna must take multiple enzymes, a vitamin for people with cystic fibrosis, and Pepcid every day.
She does manual physical therapy twice a day, and takes multiple treatments to improve her breathing every day.
To register: Registration for Anna's Amazing Race is $5 per person. Teams can register online at www.mycommunityevents.com or call Robert Godfrey at (717) 885-0195. To follow Anna's story visit Kate Becket's blog at www.sisterfibrosis.com.
-- Reach Chelsea Shank at 505-5432 or email@example.com.