It feels just like yesterday that we found out that Rowan was diagnosed with Cystic Fibrosis. Rowan does have Delta f508. I was glad we knew what was wrong but it was devastating to think that I would probably out live my son. Things have come a long way and people with CF live longer and fuller lives. They are making it to their 30's when you were lucky to make it to your teens. There are still too many young people and children having their lives cut short because of CF.
I think of myself at 30. I wasn't married yet nor did I have any children. There have been so many things that I have accomplished, seen, experienced and lived between 30 and now. I had Rowan at 34, 7 days shy of 35.
Now 30 is a statistic, not a guarantee. There are so many what ifs. We still don't know to what severity Rowan's CF will be. We also don't know how many times he will get sick. There are so many factors that can effect his quality and quantity of life. That being said, there are so many advances, new drugs and therapies that give hope. No, there isn't a cure yet and I stress the yet. I have Hope that their is one around the corner.
I am so blessed to have an amazing and supportive husband, family and friends. I made the decision to stop teaching and make Rowan my full time job. It hasn't been easy but it has been worth it. My amazing husband works hard to make sure I can focus on Rowan's needs. Unfortunately not everyone can do that.
Rowan has been growing and thriving. He has so much life and spunk. His smile is infectious and can melt the coldest of hearts. Rowan is mischievous and curious. You can't turn your back for a moment without him getting into something. Rowan knows no stranger. He smiles and talks to everybody.
When we go to the store or just out around town, Rowan makes sure to wave and talk to everyone he sees. If for some reason you are not paying attention he will get your attention. Boy does he like the ladies. I'm pretty sure he will be a heartbreaker.
Rowan is pretty much too smart for his own good. He will be 5 March 4th and it blows my mind at the things he can do and comprehend (like multiplying and division). He climbs onto everything, jumping and running from point to point. Rowan strategizes to get what he wants. He loves puzzles, building and figuring things out and boy does he love his sisters and cousin.
The reason I am telling you all of this is because he has so much life to live and so much to offer. Unfortunately things will not be all roses. We have been blessed with his health so far. I have seen other children his age waiting for lung transplants, on feeding tubes, on oxygen, spending most of their time in hospitals and even having their lives taken too soon. My heart goes out to those parents and children.
Right now Rowan does his shake vest 2 times a day. He takes a handful of vitamins, enzymes capsules with everything he eats and take 6 other types of medication 2 times a day. So that is the equivalence of about 30 pills, 12 tablets/gummies and around 5 doses of liquid. The fact that he can swollen 3 pills at a time blows my mind. I remind him just because he can doesn't mean he should .
Rowan's main issues have been digestive. His pancreas and liver are what have been hit the hardest so far. So he sees his CF team every 3 months and his Liver team about every 6 months. Rowan has been on Orkambi for a year now and doing well on it. I'm hoping this will be a game changer for him.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help Rowan's Roadies exceed our fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
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.