Gara Larson

My journey with CF begin on July 29, 2016, 3 weeks after giving birth to my first biological child, Lincoln. Everything went well with the pregnancy and the delivery except for the mere fact it took 3 days to get him out. The most beautiful baby boy. The most healthy baby boy you could imagine. For the first 3 weeks he had been thriving with some minor issues around weight gain but nothing alarming. Everything seemed to be perfect. So the call we got that Friday afternoon completely pulled the rug from under us. His new born screening results had come back and confirmed he had cystic fibrosis. For the first 2 hours that followed, I fought the diagnosis knowing the tests had to be wrong –people have children all the time and they are fine. There was no way, with our healthy backgrounds, that my son had a fatal genetic disease. I had known that I was a carrier through genetic counseling but my husband wasn’t. So the message was that we were in the clear and there was nothing to worry about. Unfortunately for us, he had one of those rare nonsense mutations that they just don’t test for.

In the midst of what I felt was complete hopelessness I leaned on the support of the people around me and eventually I found hope and the energy I needed to engage myself. I had finally accepted the fact that I couldn’t change his diagnosis but the difference was that now I knew that I had the power to change his outcome. Life will throw unimaginable things at us and there will be a time in all of our lives, where we will fall. My mother, who I sadly lost about 8 months after Lincoln’s birth, taught me that in these moments, you take your time to grieve, you get angry, you feel sorry for yourself, but when you are done there is only one option and that is to stand and YOU FIGHT. So I stood and I started being the Mom Lincoln deserves. But I do not stand alone. I have an amazing family and amazing friends, including those I have met along the way who are traveling this road with me on a daily basis, the CF Foundation who has supported me since day one and finally Chubb, the company I have worked with for 15 years. I would be remiss if I didn’t mention all of the amazing contributions they have made to support me.

There will come a day much later down the road where we all look back and we have a story to tell and I can assure with absolute certainty that giving my child up to CF is not my story.

So please join me. Help me rewrite the story of Cystic Fibrosis and give my son more tomorrows.