There's a song: "I'm Gonna Be" by The Proclaimer's comes to mind. Traditionally thought of as a love ballad-Google AI has it listed as "an anthem of perseverance and dedication." Xtreme Hike is a 30.1 mile hike slated to occur along the Appalachian trail in May 2025 and then Great Strides is several miles more local to us. I will continue to go as far as needed for this boy of ours. Here is our story:

In May of 2010 our world changed forever. Not just because of the birth of our son, but because we were about to embark on a journey we never in a million years imagined we would start. The pregnancy was generally pretty unremarkable (except for me breaking my humerus from a fall at 36 weeks and a 21 hour labor). Every screen we thought to do was low risk for any genetic or metabolic disorders. We were in for one of Gavin's newborn check-ups when we got the results of his metabolic screen done at birth. He had an elevated IRT and two copies of genes that cause cystic fibrosis. Speaking with our family physician at the time-we had hope of a false positive. Additional testing was needed to confirm but most of the staff at the CF Center at Duke Children's were ready to help us start because there was a huge probability the sweat chloride test would be positive-it was.

For the first few months Gavin developed pretty normally. Other than daily nebulizer treatments, chest PT, adding salt to breast milk, additional formula supplementation (added directly to the pumped milk so got calories but not volume), and giving him pancreatic enzymes in a tiny amount of applesauce-developmentally he was doing well. He had horrible reflux but that can be normal. Things were going fairly well. We worked with the pediatric pulmonary team, a nutritionist, a social worker, and a local daycare to make sure we were doing everything we could to keep him healthy. Well, that changed when he got to 9 months.

I'll summarize the next few years (2011-2015). We would experience four hospitalizations-bronchiolitis, pneumonia, evaluations for placement of a feeding tube (endoscopy, CT scans, bronchoscopies), sinus surgery-all no less than 12 days. Gavin experienced rapidly declined growth in his growth curve. He was getting ready for kindergarten and he was so small people thought he was a highly intelligent three year old. Also-research for one of his mutations had a breakthrough-Kalydeco was developed and approved and at the end of 2014-it was approved for his age group!

We all know how insurance can be a bit behind the times. After the trauma of the 2015 hospitalization, we listened to his pulmonary care team and said, "yes" to this first life-changing treatment. The medication was started in the spring and by summer we were able to forgo feeding tube replacement because Gavin gained 10 pounds and grew over two inches!

Since 2015 Gavin has had no hospitalizations. A few years ago he was changed to a medication called Trikafta which is a combination of medications that change his genetic defect at the cellular level. I've posted about our journey many times, but he's doing so well. His last antibiotic regimen for a CF exacerbation was over a year ago. We still have people that don't realize all that goes on "behind the scenes." Cystic Fibrosis does not define his (our) life. He has participated in sports, theater, choir, and many other things. His talents are constantly growing and changing.

He is still on multiple medications, and takes inhaled medications along with vest therapy twice daily (more if he's sick). Gavin cannot be around other children with cystic fibrosis and treatments for any illness often need to be aggressive to keep him in his stable state of health. He's actually one of the lucky ones. 10% of those living with cystic fibrosis can't benefit from the new medications. There is no cure. Over the years we stand alongside other parents, fighters, medical teams, friends, and others who are sharing the burden of loved ones in battle with this disease. There are amazing resources that need to be maintained. The CF Foundation was started by a mother for her children. Funds are largely from family and friends who want to see this disease ended.

Please join us by donating in support of Xtreme Hike 2025 and Great Strides 2025 this year. Fundraising for Xtreme Hike will end for me April 30, 2025 and then I will move on to Great Strides 2025. The goal for both is as much as possible but Xtreme Hike has a minimum goal to raise by April 30, 2025. I want to raise at least $5000 by that time. Whether you're an individual or a business-I will take your donation! It is tax deductible.