Simons Roar

Super 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 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 three 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 your love and support.