My Xtreme Hike Story

Many of you have been on this journey with us since the very beginning. For those of you who we have met along the way, this is our story. This is Jacob’s story. 

On a Monday morning in 2017, our son, Jacob, came into this world. We were euphoric with joy. We gushed over his features (he had his Dad’s jelly tot nose, but the rest was all his Mama). On returning home from the hospital, that joy immediately evaporated. He screamed day and night. Those serene moments when a newborn sleeps were spent crying and feeding around the clock, every single hour. We were constantly changing diapers and trying to calm his hiccups. I was in oversupply and dropping weight from feeding him so much. He slept maybe 2-4 hours a day. We were new parents and knew it was going to be a challenge, but was this normal? Two weeks later, at 4 o’clock in the afternoon, on November 28, the call came. Jacob has Cystic Fibrosis, a rare genetic lung disease, which was identified on the absolute blessing that is Nevada’s mandatory newborn screening. I can only remember two things from that call: the nurse said there is no cure, and me apologizing to her that she had to give such bad news, which is still somehow hilarious to me. In spite of absolutely knowing better, we became consumed by the Google rabbit hole for the remainder of the evening.

The following day, we would meet our first allies in the fight, Jacob’s cystic fibrosis team with Lung Specialists of Nevada. Jacob’s pancreas wasn’t working, so every drop of milk or formula we gave him was barely being absorbed. He had lost over 20% of his birth weight and was on the verge of a failure to thrive diagnosis. The solution, giving digestive enzymes before every.single.feeding for the rest of his life. The medication would have to be sprinkled on applesauce and spoon fed. You know they don’t make spoons small enough for newborns? We fed Jacob with a tiny egg spoon, which we still have saved in his memory box, and joke that he really was born with a “silver spoon.” Every inclination I had to be a crunchy mom was abandoned when I began spoon feeding applesauce to my two week old baby. We were in battle mode, and swore that from that point and through his lifetime, Jacob would have access whatever he needed to help him win this fight.

Two weeks later, he began his first breathing treatments. Twice daily nebulization of a bronchodilator and three 20 minute sessions of chest physiotherapy, involving clapping of his chest and back in the areas of his lung fields, to help loosen mucus. The mucus is the primary assault with cystic fibrosis. It takes up residency in the GI tract and lungs, and creates a warm home for bacteria and subsequent lung infections. If not managed, it leads to decline in lung function, and is eventually fatal. But explain this to two new parents who can only look at their baby and see absolute perfection. It’s mind blowing.

Over the following years we scrutinized over weight and achieving the optimal BMI needed to fight lung infections, and watched his weight tank when he would get sick. More medications and more treatments would be added. Hours in the car would be spent driving to different specialists. By the time he was 2 years old, Jacob knew how to stick his arm out for a blood draw, or which finger was used for pulse oximetry reading. By the time he was 3.5 years old he could swallow pills whole. You wouldn’t know that from watching him fly a kite, or chase bubbles in the yard, because that is one of the greatest deceptions of CF, “He just looks so healthy.” 

Science was growing along with Jacob, and in 2018 whispers began to extend down the research pipeline, whispers of a new medication that was helping to mitigate the progression of the disease, and drastically alleviate its symptoms.  In 2019, Trikafta was released for adults and teenagers, and the stories of success were astounding, as many called it the closest thing to a cure that has happened for CF. It gave us joy, and an optimism we hadn’t allowed ourselves to feel in a very long time. 

Then there was COVID. 

Research stalled to a near halt. We masked, we stayed home, we cleaned. Life marched on and eventually Jacob was able to start school, which would make him incredibly happy but also very frequently ill. In 2023 we got the news. The FDA had approved Trikafta for Jacob’s age range. And so begins his next chapter. 

The research that goes into producing drugs like Trikafta and potential cures is largely funded by the Cystic Fibrosis Foundation. When people say there isn’t a cure for CF, we like to remind them that it’s out there, just waiting to be discovered and perfected, so one day, when two terrified parents get the phone call about their baby’s diagnosis, it ends with a cure and a sigh of relief. 

On September 30, Jonathan and I will be hiking 26 straight miles with a group of equally-determined allies and CF warriors, to raise money for the Cystic Fibrosis Foundation. The money we raise will go towards research for treatments and, one day, a cure. 30,000 people in the United States have cystic fibrosis. 

Help us in this fight so no one has to watch their loved ones lose this battle. Help us give everyone the future they deserve, the life we all want for our children, mothers, fathers, and friends. We thank you so much for your support.