Simon’s Story
At 6 days old our family received an unexpected phone call from our family physician; our son Simon’s PA State Newborn Test had come back positive with markers for Cystic Fibrosis. At 12 days old we were at Children’s Hospital of Pittsburgh for a sweat test to confirm the diagnosis. That same day we met the CF Clinic Team and began to familiarize ourselves with what our new normal would be. Up until this point we had never heard of the Cystic Fibrosis Foundation.
In the time since we have leaned on them heavily as a resource, new family, and shoulder to cry on. Their team helped us navigate this new terrain, connecting us with the information, research, and most importantly the CF community.
Simon has been a warrior through it all. On top of the standard newborn appointments he also had frequent trips to Pittsburgh Children’s, lab draws, X-rays, PFTs, IVs, breathing treatments, and varying new medications. This is the only life he knows and he does it well.
While we are caring for him during the long days and nights it is he who lives it. Regardless of the good or bad, and we have been blessed with many good days, he always has a smile. His inevitable vivacious laugh pulls all who meet him in like a warm hug. He knows no bounds and everyday surprises us with what he is capable of. He loves to climb, explore the creeks and woods by our home, and fly like Buzz Lightyear with his big sister Juniper.
He is now two years old; we don’t know where the future will take us, but we do know the staff and families of the CF foundation will be by our side. Keep fighting until CF stands for “cure found.”
We thank you for all your love and support.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.