The last year has been the best and most difficult of our lives. We welcomed our son Roen on January 8th, a winter day that was unseasonably warm and sunny. Now knowing Roen, we realize it wasn't a coincidence that this beautiful day brought us the most amazing gift we have ever received. Roen was diagnosed with cystic fibrosis within a week of his birth, after an emergency surgery for a cf related intestinal blockage called meconium ileus. We spent 25 days in the NICU at Children's Hospital allowing Roen to heal from his surgery as we began to wrap our minds around this new life.
We had heard of cf before, but had no clue what it meant for Roen or our family and we're still learning every day. In the last year Roen has taken over 9,240 enzymes to allow him to digest his food, completed more than 668 nebulizer treatments, 335 hours of chest physical therapy and countless doctor's visits to keep him as healthy as possible. He's been poked, prodded, held down for blood draws, xrays and treatments and given powerful antibiotics many times to keep lung infections at bay. Cf has taken a lot from our family in this last year. It's taken away family time, it's taken away trips that we had planned. It's taken peace of mind, carefree moments that we dreamed of before Roen was born and kisses and hugs without a nagging worry in the back of our minds.
But it's given us so much more. It has given us appreciation and gratitude; the ability to notice the good in the little and the mundane things that aren't so little or mundane to us anymore. It has forced us to slow down and focus more on the things in our lives that are really important. It has shown us just how many people love us and how big our army truly is. Last year's Great Strides event almost didn't happen for us. We were so new to cf that it still seemed too heavy and difficult to wrap our minds around, let alone gather up the energy and strength to start fundraising. But our family quietly created Roen's Roariors on our behalf and in just a few weeks we had raised over $20,000 for the CF Foundation. Our minds were (and still are) blown by what that means and what it showed us. That we aren't alone in this.
Cf can make you feel so isolated. Being a part of Great Strides has been an incredible, tangible reminder of the love that Roen has brought into our lives and the love that our friends and family have for us. We can't wait to blow 2019's fundraising numbers out of the water this year with your help. Every dollar we raise adds days, months and years to Roen's life. It adds memories to be made and moments of breathing easy, both literally and figuratively for our family and the entire cf community.
We are so blessed to be raising this sweet boy and equally blessed to have the support of each of you as we fight cf together. THANK YOU!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.