This beautiful Monday we are meeting Carli Jo and Jacob Anderson 21 month old twins! They are your everyday toddlers, Carli Jo’s favorite past times are singing nursery rhymes, twirling, going down her slide, taking care of her twin brother, dressing herself, riding in the wagon, coloring, and hiding away in her room “reading” a pile of books. Jake’s favorite pastimes include throwing balls, being outside, watching Mickey Mouse Clubhouse, counting to ten, climbing, falling, picking flowers for his mommy, going on drives in the car, and turning lights on and off.
Jake and Carli live with their mommy, daddy, and big sister, Hailey (5). Hailey loves her twins and is always looking for ways to protect them because they have “sickness fibrosis”. Carli Jo is older than Jake by one minute and also takes her role as his big sister very seriously. She likes to bring him his blanket and pacifier when he is tired, pat his back when he is hurt, or give him hugs, kisses, and toys when he is sad. They also have countless grandparents, aunts, uncles, and cousins who love them and spoil them rotten. Carli Jo and Jake are the only two people in our entire family with cystic fibrosis.
Unfortunately these cuties were diagnosed with cystic fibrosis (CF) at three weeks old. The doctors weren’t particularly concerned about their health at the time. They were both nearly 7 lbs when they were born, which is pretty good for twins, and they were putting on reasonable amounts of weight. Their newborn screeners both came back indicating that they could have CF and that was the first time they had ever really heard of it. The pediatrician assured the Anderson’s that it was probably an error with the test and that false positives can happen. After she left the room, their mom remembered googling cystic fibrosis and telling her husband, “Cody, this is a really bad one.”
“Even after a second round of blood tests came back positive, we were still told that it was “statistically improbable” that both twins coming from a family line with no history of cystic fibrosis would have the disease. The sweat tests confirmed it and it’s been a whirlwind of appointments and treatments ever since.”
Carli and Jake do 30 minutes of respiratory therapy in their vests before breakfast each morning and again just before bed. In our family we call it “thumping”. Jake is fighting a pseudomonas infection, so he does two inhaled tobramycin treatments every day as well. After vests, they drink a bottle of Kate Farms nutritional supplement with Aquadeks vitamins, vitamin D, and salt added. They have a very structured meal plan that involves meals, snacks, and/or Kate Farms every three hours to ensure they are getting all the calories they need to grow strong. Anytime Jake and Carli eat, they take enzymes to help them digest nutrients. They regularly attend CF clinics so that their health team can assess their progress and make adjustments to their treatment plans.
“We love the doctors and nurses at the MaryBridge Tacoma CF Clinic!”
Their greatest struggle so far when it comes to fighting cystic fibrosis has been the recurrent infections in Jake’s lungs. They are on our third 28-day round of tobramycin trying to kill his pseudomonas. Carli and Jake aren’t old enough to have to deal with the feelings of fear, isolation, or sadness that come hand-in-hand with having a life-long disease, but when that time comes, they will be so lucky to have each other.
“We want others to know that they can help. Financially, sure. It’s going to take a lot of money to fund a cure for this disease. We have been blessed with family and friends who selflessly donate to that cure every day. But that isn’t the only way they can help! They can wash their hands and teach their children to do the same. They can stay home when they are sick. They can vote for laws that protect health care rights for the people who are most vulnerable. They can be understanding and accommodating when CF families have to cancel or change plans at a moment’s notice. They can send prayers, positive thoughts, and support to families fighting this disease. But most of all, we want others to know that this disease does not take away one bit of the joy or pride we feel to be raising Jake and Carli. Their lives are so rich and so good. They have so much purpose outside of this disease but also because of this disease. I hope that people outside the CF community can look in and see that joy and that pride as we show off our beautiful warriors.”-Carli Jo & Jakes Mama
We wanted to share Carli Jo & Jakes story today because it is so on trend. In the current environment remember your CF families might not be able to come to your holiday parties for spend an evening trick or treating. Please be patient and understanding with everyone during these trying times. If you would like to donate to help cure CF please CLICK HERE.