It’s hard for any of us to admit we may have a flaw let alone a defect. For Rick and I the stars, the sun and the moon aligned so that we may pass our defect onto Sal. Harsh yes it may be but it’s our reality. Quite incredible really, when you stop and think about it. Well, there really wasn’t a cosmic alliance but it sounds good. For us it was just science. Science that for well over a decade we have had to learn to understand. With each passing year the science evolves, as does our understanding.
Here’s the understanding… In July of 2015 Orkambi, a drug aimed at altering the basic defect of cystic fibrosis was approved for use by the FDA. Let me say it again, AIMED at ALTERING the BASIC DEFECT of CF. This means that for Sal his faulty gene because of CF can be corrected. Sal’s body will longer have a medium for bacteria to cause havoc in his body. No longer will he be a prisoner of sinus infections, deadly lung infections, bowel obstructions, and hopefully sodium issues when he is playing sports. For Sal this is life changing. But more importantly, the hope with this drug is, that no more damage will be created in Sal’s body. By correcting the faulty gene we stop the progressive damage. In turn, Sal lives a longer productive life!
When Rick and I decided to make fundraising our passion and past time, I can honestly say that we were always cautiously optimistic that a cure would come for our son but I never thought that it would be now!
Orkambi is not a cure but it is a damn good start! For all of you that have followed us for the last 14 years, this reality is because of your generosity! Your donations, volunteerism and dedication have allowed us the funds to have Orkambi. To Vertex and The Cystic Fibrosis Foundation thank you! Thank you for taking a chance on 30,000 individuals that can breathe easy because of you.
Sal will start his Orkambi in October. We are hoping and praying his course with CF will forever be changed. Thank-you, thank -you, thank-you are the only words that I can come up with right now. Please pray for Sal as he begins this new journey!
Until there’s a cure,
Jenny and Rick