Seeking a cure for cystic fibrosis

SUMMIT COVE — Try breathing through a coffee stirrer. That is the lung capacity of local 8-year-old Megan Andersen.

Megan has cystic fibrosis, a chronic life-threatening disease that affects the lungs and digestive system in about 30,000 Americans. It is also a disease that the public generally knows little about, and as of now, there is no cure.

However, strides are being made. In the 1950s, few children with this disease lived to attend elementary school, according to the Cystic Fibrosis Foundation, an organization that since 1955 has been the driving force pursuing a cure. Today, the median age of survival is 37 — the same age as Megan’s mom, Kim Andersen.

“They live wondering ‘Will I live to be old enough to be a mom? Or if I do will I see them to go kindergarten?’” Kim said, choking back emotion.

So, the Andersens, of Summit Cove, are working to raise awareness and are fundraising for research. On June 14, the first Summit County Great Strides Walk for CF will be held.

<b>Discovering cystic fibrosis</b>

As a baby Megan was frequently sick. Her mom took her to seven different physicians who assured her that it was just infant allergies. Then, at 18-months, shortly after the family moved from Illinois to Texas, a doctor made the diagnosis.

He immediately picked up on her symptoms, but warned Megan’s parents not to research the disease until they were sure because the information would be terrifying. Now, almost all states test for cystic fibrosis at birth, and every day, three new babies are born with it, experts say.

In some ways, Dave and Kim Andersen felt relieved to have an answer why their baby girl had been sick so often. But their world changed in that moment. As did the world of their 11-year-old daughter, Lizi, a fifth-grader at Summit Cove Elementary Schoo. Her mom says Lizi has probably been affected the most.

Megan has been hospitalized four times for two-week IV antibiotic treatments. She has had three sinus surgeries, two home IVs and, on a daily basis, she does about 40 minutes of treatments involving wearing a vest that shakes her to get the mucus out of her lungs.

She takes more than 40 pills a day when she is healthy and even more if she is sick.

A daily high-fat shake is part of her routine in order to keep her weight up. And at least five times, Kim has received a call from someone at Summit Cove Elementary School saying she may want to come get Megan because another student is coughing.

“If that child coughs, my world stops,” Kim said. “You just know that could be leading to a lung infection.”

But without knowing about all of this, no one would have any idea.

<b>Routine life</b>

For Megan, pills, dally treatments and trips to The Children’s Hospital in Denver are just part of her life. Treatments are like brushing teeth is for other children her age. She doesn’t pout about it and would never want someone to feel sorry for her, her friends said.

“All of her friends are so good about reminding her, ‘Did you take your enzymes?’” her mom said with a smile.

Her best friends are twins with her in third grade at Summit Cove, Loren and Katelyn Keen, 9. “It doesn’t make her any different,” Loren declared during an interview at the Andersens’ home before the girls ran off to play more.

Megan skis on Team Summit and proudly displays her top-place racing ribbons. She mountain bikes. She creates games with her best friends, loves popsicles and pepperoni pizza and likes to draw.

She is an excited, bubbly, full-of-energy child, just like her peers. And when asked how she would describe cystic fibrosis to people, she simply says, “I would just tell them I have to take pills.”

Kim added, “She doesn’t know any different. She’ll sit down at breakfast with 13 pills.” Still, “you cannot forget about it. It is in her face.”

And it is even the reason the Andersens moved to Summit County about three and a half years ago.

A family vacation led them from Dallas to Breckenridge. For that one week, Megan’s symptoms cleared up and she didn’t cough until they drove home. So, two weeks later, the family made the move and Dave began commuting to work in Dallas.

<b>The altered gene</b>

For Megan to get cystic fibrosis both of her parents had to be carriers of an altered gene. When both partners in a couple are carriers, any child they have has a 25 percent chance of developing cystic fibrosis, according to The American College of Obstetricians and Gynecologist.

Today, more than 10 million Americans are unknowingly, symptomless carriers of the gene that causes the disease.

Kim doesn’t often think about Megan’s future. Instead she focuses on the positive, the way her daughter does.

And in the meantime, they are trying to help find a cure by working with the Cystic Fibrosis Foundation to raise money for research.

Kim organized the benefit that will take place in Dillon. The summer day will include a barbecue and short, child-friendly walk.

It grew out of an informal gathering last year at a park in Dillon where they raised thousands for the Cystic Fibrosis Foundation. Megan’s teacher and a handful of her friends had signed up for a walk in Denver, but Megan wasn’t able to go because of hot weather could have easily dehydrated her and left her sick. So, they rented out a park and put out a jar for anyone who wanted to donate.

They were amazed how the community came together, and are hoping to repeat that success.

<i>Lory Pounder can be reached at (970) 668-4628, or at lpounder@summitdaily.com.</i>

Cystic Fibrosis walk

Anyone interested in participating in the inaugural Summit County Great Strides Walk for CF, can sign up now online at cff.org. Those interested in more information about the walk or to sign up can also do so by e-mailing Kim Andersen, of Summit Cove, at kim4cf@mac.com.