I stand before you tonight so very humbled to have been asked to be here and I feel to do our sons fight the justice it deserves that I need to be as honest as I can be. Ours is a CF story I wish you never had to hear. I wish it were simply a horrible lie, but it is our reality and sadly, the reality of so many others fighting this monster we call Cystic Fibrosis.
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
His list of daily medication is like picking up prescriptio
In addition to the 3 hours he spends doing meds and breathing treatments, Conner must also do chest physiothera
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 simultaneou
He requires oxygen quite frequently each day so we have an oxygen concentrato
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.
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 effortlessl
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.