He is a very determined kid. He is the bravest boy I’ve ever met. His entire life has been one hospital stay to the next. By his 3rd bday we realized we needed to move from the LB peninsula to be closer to Doernbecher, because of his frequent hospitalizations. Conner is considered a frequent flier at the hospital because in his 6 short years he’s been admitted 21 times because of CF. His life is filled with PICC lines, IV’s, EKG’s, medications, Lung function tests, x-rays, blood draws, blood sugar checks, sputum cultures, breathing treatments, tube feedings, chest physiotherapy, ultrasounds, bronchoscopies, swallow studies, 2 different ports for IV’s, g-tubes, scoliosis tests, Doernbecher Children’s Hospital and Shriner's as well…
His list of daily medication is like picking up prescriptions for your grandparents. Over 15 different medications he takes every single day costing over $8000 a month and taking over 3 hours a day to administer. Reflux meds, oral and inhaled antibiotics, enzymes to help him digest food, vitamins his body is deficient in, mucus thinners, bronchodilators and probiotics. By days end he has done 24 doses of medicine. Those are simply the preventative medicines, when he has an active lung infection add to that list a few powerful oral antibiotics or even a hospital admit for IV antibiotics and the cost and time spent on treatments goes up significantly.
In addition to the 3 hours he spends doing meds and breathing treatments, Conner must also do chest physiotherapy to loosen the mucus from his lungs each day. He alternates between doing his VEST machine and a PEP device for airway clearance. PEP takes about 15 minutes to do each time which is 4 times a day and VEST therapy takes 30 minutes twice a day. Both therapies help him to clear the thick mucus from building up in his lungs causing infection and inflammation.
CF also makes digestion and weight gain nearly impossible for Conner. He fights for every single ounce he gains. You can count his ribs, and fit his thighs in the center of your encircled hand. He has almost completely stopped eating now, because it is too hard for him to breathe and eat simultaneously. So he has a G-tube, where he receives a very high calorie, broken down easy to absorb formula and also straight fat in it 3 times a day, directly into his stomach. And he receives even more formula overnight as he dreams. Even in his sleep Conner can’t escape the realities of this disease.
He requires oxygen quite frequently each day so we have an oxygen concentrator as well as portable tanks thru out our home. Every single breath he takes is a struggle. He can no longer say full sentences without stopping to gasp for air. He has a bi-pap machine that we’re working with him on, that will help his lungs rest at night while he sleeps. Because the simple job of breathing that you and I take for granted has taken its toll on his tired, overworked lungs. They need a break or they’re going to give up.
All of this, you can imagine makes it very difficult for Conner to just be 6. CF surrounds his days and has made our family change the way we live our lives. Its affected us greatly. We had to move. We can’t plan vacations because his health is so unreliable. Our home has become the battlefield against the war we wage against CF with medical equipment scattered all over our house. We had to get him a handicapped parking tag because he can’t walk far distances any longer. He no longer goes to school with his friends because the risk of catching a virus has become too great, so he gets home tutoring by a teacher. I have to screen every single person that comes to our home for illness because if Conner gets even a cold, he’ll wind up back in the hospital.
This past year has been Conner’s worst year yet. We’ve seen first-hand how quickly CF can cause a person’s health to deteriorate when it attacks full force. Conner was admitted to the hospital 9 times last year alone, and between those admits, he also did home antibiotics a number of times as well. He spent most of last year fighting for his life. Or more accurately, we’ve spent the past year not trying to save his life, but to postpone his death.CF has taken residence in his life in a very detrimental way, shaking our family to its core, desperate for a miracle. We’ve been told that “there’s nothing more they can do for our son”. So we know where we’re heading, but we have no idea when and how, or if he will suffer. This pain that I feel fuels me even more to continue our fight, not only for our son, but for every other parent of a CF child, that they may never know this horrendous and indescribable pain that we are feeling every second of everyday now. Because this disease doesn’t just affect the 30,000 people who test positive for it, it affects their families, their friends, their loved ones…this disease effects hundreds of thousands of people.
I have complete faith that a cure will be found. I realize the chances of it happening in time for our son are slim, but I am so encouraged for the youngest of souls battling this disease. I am so hopeful that many of the CF families here tonight will see their children grow old and see their dreams of a cure happen in time for their loved ones. We must find that cure. There is simply no alternative.
You and I are in this fight together, yet our battles are not the same. I’m a mother, fighting desperately to keep my son alive. And you are a group of amazing people, financially trying to SAVE lives. One battle simply cannot be won w/o the other. We as CF parents have no chance to save our children’s lives w/o researchers dedicated to finding a cure. And researchers can’t search for that miracle cure without financial support. We need you more than you will ever fully realize.
After all, doesn’t my family deserve to be able to see Conner’s gap toothed smile fill in with teeth? Shouldn’t he be able to breathe in deep breaths of air effortlessly like you and I? Isn’t it cruel that so many lives have already been lost? It is just not acceptable to see our son cry in pain because his lungs hurt when he breathes…and it’s not normal for parents to be thinking about having to bury their young child. Parents aren’t supposed to outlive their children. It’s not ok that those in their 20’s with CF are considered the “old timers” of this disease. It shouldn’t be acceptable that instead of enjoying life fresh out of college that many of these young adults are going thru the emotional and physical struggles of being put on the transplant list for new lungs. They are still babies. This disease is lethal. It does not overlook even the people with “mild” cf. it finds ways to make their lives more difficult to live as well. It takes no prisoners, only lives. And that simply can’t be tolerated.
Thank you so much for partnering with us to stand up to this disease and stop it dead in its tracks. You are our hero’s. Your donations show those with CF that their lives are so much more than a clinical statistic, but that their lives are worth just as much as yours and mine. Your money funds clinical trials, creates new therapies, extends people’s lives, and gives our families more precious time to simply live, to love and to breathe. Thank you for giving us more time to fight for our sweet Conner, because we’re not ready to give up and we’re certainly not done loving him yet.
