In August of 2008, Lake Wedowee Life gave cystic fibrosis a local face by introducing our readers to two brothers Gavin and Jake Baker that were diagnosed with the disease in 2002. As part of our 10 YEARS STRONG celebration, Kelly Caldwell sat down with their mom Pam to discuss CF and how far the brothers have come to not only survive cystic fibrosis but to thrive in a variety of ways! We hope you enjoy the re-visit with the Fabulous Baker Boys!
Cystic Fibrosis What is it?
A progressive, genetic disease that effects roughly 30,000 Americans with about 1,000 new cases diagnosed annually. What it does? It causes lung problems and malnutrition due to a build up of a thick sticky mucus. “Years ago, the typical CF person was someone who was very thin, weak looking and got out of breath by going
up a flight of stairs,” Jon Baker, said back in 2008. “Now because of the great strides made, my typical CF person looks a lot more like Gavin and Jake.”
It was true then and even truer today. “When the boys were born, the life expectancy was 32,” Pam, Gavin and Jake’s mom, said. “Thankfully, we’ve watched that number get higher and higher over the years. It is currently about 45 BUT that doesn’t include the results of a super exciting new medication that the boys have been on for the past 2 years called Orkambi.
“This is a drug that, instead of just treating the symptoms of cf, it treats the underlying cause of the disease on the cellular level - a HUGE medical breakthrough! Taking Orkambi twice a day literally slows down the progression of the disease - the boys could actually feel the medication working within the first 2 hours of taking it! The revolutionary drug was approved by the Food and Drug Administration in 2015.
“We hosted a giant “First Dose” party with a steel drum band, food, drinks, the whole deal and had about 200 people there to watch as Gavin and Jake took their literal first dose of these magical little pills. Of course, we then played the Rocky theme song to cap off the moment!”
With the advancements and new medications Gavin 19 and Jake 15 are healthier than ever. “They both can run a mile in about five and a half minutes,” Pam said. “But, they still have to do a couple of hours of treatments every day, have to get plenty of exercise, take over 50 pills a day and eat at least 4,000 calories to maintain their weight, but the future looks so much brighter for them!”
Gavin is a senior with hopes of attending College of Charleston in the fall. According to his mom, he still wakeboards but hasn’t competed since he was 13. (But he did manage to snag third place at nationals when he was 9). Now, his main sport is lacrosse and is on the varsity team at Roswell High School.
Jake, does all of the water sports, too, but his favorite is wake skating. He’s
a sophomore at Riverside Military Academy and is on the Varsity tennis team. He’s also an avid reader and pretty amazing artist. Jake dreams of attending MIT and wants to
work in the medical field - maybe even a surgeon (he LOVES science - especially when he gets to dissect stuff!). He’s even attending a camp this summer at Emory University that is all about different careers in the medical field so he can have a better
idea of what he wants to pursue.
Now, for those that read the original article or are paying attention to the pictures, you may have noticed Sabrina, 12 and Duncan, 9.
“Sabrina is my athlete,” Pam said. “She plays highly competitive volleyball pretty much year round. She’s the most outgoing, social butterfly and has 175 best friends. (that’s only a slight exaggeration.)
“But, she can still burp louder than her brothers,” Pam said laughing.
Now as for Duncan.
“We affectionately refer to him as our ‘Bonus Baker’ since he wasn’t exactly in the plan,” Pam said. “I was so afraid he would be born with cf that I had a CVS test done at 9 weeks pregnant to test him in utero. We were actually on our boat at the lake when the doctor called to say that he was only a carrier and wouldn’t have cystic fibrosis. “I pretty much had a complete meltdown right there on the water.”
The Bakers have also felt it necessary to raise funds and awareness for cystic fibrosis since the brothers were diagnosed in 2002. The Baker Boys’ Battalion has continued to fund-raise over the years.
“We still have walk teams around the country and in Canada but we focus most of our efforts on what we’ve coined “passion fundraising” - taking what you love to do and turning it into a way to raise money for cf. We’ve held tennis tournaments, golf tournaments, polo events, Porsche events but our most successful to date is our St. Patrick’s Day event called “ShamRockin’ For A Cure.” Shamrockin’ For a Cure celebrates its 10 year this March and the “party with a purpose” has grown to about 1500 guests and raises close to $500,000 a year. “Like our walks, we’ve expanded our party to other places including Chicago, Vermont and just this year Gainesville, Ga.,” Pam said.
The party with a purpose has raised $2.5 million over the years and the BBB has raised over $4 million since Gavin and Jake were diagnosed in 2002.
“Oh and we’ve been the #1 team in Atlanta since year 1 and have been the #1 family team in the country for the past 8 years....like I said...we’re very competitive!”
To read the original Lake Wedowee Life about the Bakers,
please visit https://issuu.com/newslwl/docs/lwl_augsept.
To learn more about the Baker’s fundraising efforts go to
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