Each year at this time, our family begins fundraising for the Cystic Fibrosis Foundation. It’s not a difficult decision, as any parent will do whatever they can to ensure the good health of their
child. I’ve said that phrase thousands of times since my son, Jacob, was born. When he was barely a month old, Jacob was diagnosed with cystic fibrosis (CF). It’s a nasty disease that causes problems with the lungs and digestive system. Like everyone with CF, Jacob’s body produces a thick, sticky mucus that clogs the lungs and blocks the pancreas. Imagine dipping your hand into a tub of glue and letting it dry for a minute, then trying to pull your fingers apart. It can be done, but the effort is laborious. The gunk that gets into CF patients lungs is a breeding ground for bacteria, bacteria that leads to life threatening infections.
To combat the effects of CF, Jacob must take a lot of medicine, both inhaled and orally. It’s tedious, costly and takes a toll on a kid’s life, as well as his family’s. I’m not going to lie to you, there have been plenty of arguments in our house- so much shouting and anger that I sometimes wonder what the neighbors must think. But, like I said, you do whatever it takes to make sure that your child is healthy, even if it means heated debates with your ten-year-old.
In addition to daily breathing treatments (”breathers,” as we call them), Jacob must also take supplemental enzymes to help his body absorb nutrients with each meal or snack. Did you know that it’s the job of the pancreas is to release natural enzymes that allow the body to absorb nutrients? I sure didn’t, but I learned fast. With their pancreas blocked by the mucus, a CF patient can grow thin and pale without enzymes, weakening them in the event of an infectious illness, such as pneumonia. Jacob has been taking enzymes since he was an infant. At first we placed them in his mouth, then we taught his to toss back the beads found in the capsules using a children’s cough syrup cup, and finally he learned to swallow the large pills by himself. I think he was three when he accomplished that task.
Living with a chronic illness, Jacob sees the world a little differently. As he’s gotten older he comprehends that he’s not like his friends and that having to wake up at 6:30 in the morning and strap himself into his vibrating vest and sucking down medicine for twenty minutes, and doing the same thing for forty-five minutes every night when he’d rather be kicking back and watching Adventure Time with his dad, is a big old pain in the ass. Jake is passionate and wears his heart on his sleeve, which leads to the arguments he has with his parents. He hates having to take pills. He hates going to the doctor and getting blood drawn and having X-rays and getting throat cultures. He hates that he can’t meet other CF people because they may pass a deadly bacteria to each other. He hates CF.
I would do anything to help Jacob get rid of this disease, but I’m not a doctor or a scientist. I’m just a dude with a pen and paper who pounds away on a computer keyboard and does his best to keep people informed of this disease. CF doesn’t have a big marketing campaign that airs on VH1 or in movie theaters, and it doesn’t have a big name celebrity in its corner (although, I do love Lewis Black and everything he’s done to combat CF). And of course, besides telling people about the disease, I do what I can to fundraise for the CF Foundation, including their annual Great Strides 5K walk.
Each year for the past decade our family has walked with other CF families in the Valencia, CA Great Strides. The efforts of our family and the thousands around the country are paying off as new medications have been introduced that strengthen the hope that a cure for CF is on the horizon. The latest of these medications is the FDA approved Kalydeco, a major advance in the search for a cure for CF. This drug restores the function of a defective protein in people with a certain CF mutation, about 12% of the CF population. Although Jacob doesn’t have this particular mutation and won’t benefit from this drug, we’re still very hopeful. Researchers believe that the breakthrough of Kalydeco will eventually lead to new therapies that will benefit more people living with the disease.
Once again, Julie and I have created a fundraising video (which you can see here) to help raise money for Great Strides. This year we chose to reflect of the past ten years through photos that range from the days after Jacob was born to just a little over a month ago. We asked Jacob to pick the song to accompany the video and his first choice was the Foo Fighter anthem, ”Walk.” He’s loved the song ever since he first heard it during the end credits of the film, Thor. Everyone in the family eventually became a fan of the song after I began playing it in the house. The whole family rocks out to ”Walk.”
We faced a dilemma, though. With the videos we’ve created in year’s past, our daughter has grown to hate the songs we use due to the emotional impact these videos have on her. Thus, such classics like The Beatles ”Here Comes the Sun” and Bruce Springsteen’s ”Working on a Dream” aren’t played when she’s present in the room. Jules and I wrestled with the decision to use “Walk,” as we wanted Jacob to feel fully involved with the creative process of making the video, especially since it’s about him! Being fully aware that using ”Walk” would ”ruin” the song for his older sister, Jake decided that we should pick something else, a song that she already hates. Thus, we wound up using One Republic’s ”Good Life” (to great effect, I might add). Once again, I was blown away by the capacity of love and consideration that my kids have for each other.
Perhaps it’s best that we didn’t use ”Walk.” The final time through the bridge, leader Dave Grohl shreds his vocal cords, singing, ”I never wanna die/I never wanna leave/I’ll never say goodbye.” Those lines seem a little too intense for a 10-year-old fighting a life threatening illness. At least, they are for his parents.
Since we didn’t use “Walk” for the video, today I offer you the Foo Fighter’s Grammy Award winning single. It’s a song that will always bring to mind visions of Thor, the Marvel Comics super hero, and forever remind me of a 10-year-old super hero rocking out with his big sis.
If you would like to contribute to the Team Jacob for this year’s Great Strides Walk, please click on this link. Thank you!
Comments