There are approximately 30,000 Americans living with cystic fibrosis. They are people just like you and me who struggle every day just to breathe. We walk for Jude and hope you will support us in our efforts. Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Real progress has been for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Please consider making a donation to my Great Strides fundraising campaign today!
Please support us!
He’s my most precious treasure. The one that looks to me to make the world relatable and safe and magic. He grew in me from seed and we have shared each and every sacred day forging a bond unlike any I have known.
He’s my biggest teacher. His up’s and down’s teach me how to ride the waves, how to ground in empathy, how to stay present even when I want to look away.
So you can imagine the sting and the pain when he is the only kid hacking on the soccer field. When he wakes us up night after night coughing and coughing until his belly button hurts no cold or virus in sight. You can imagine the fear when his pulmonologist says, "his lung function has decreased, the images show moderate lung disease and he’s losing weight."
My animal instincts kick up. I am all fight or flight. I will stop the world to protect this most precious part of my soul.
I over function, kick into high gear, resource in every direction, sink to the bottom of despair. He is my child. My son. Our sunshine.
And no one around me seems to get it. Even some that are closest to him remarking “he looks just fine.” But on the inside things don’t work just fine. I can honestly tell you they don’t. It’s his lungs and his digestion and his liver. It’s his parts that he needs in order to be ok over the long term here.
It takes a fine tuned machine of care and service to keep our Jude looking and functioning at the level he is. We are vigilant. We are focused. The diagnosis of Cystic Fibrosis came with a job description we did no apply with previous experience for.
It’s 45 enzymes a day, it’s three breathing treatments for at minimum an hour a day, it’s hand sanitizer, the most clean, healthy fat diet a day seven days a week. 24/7. It’s never a down day. It’s Jude’s reality forever. He will never get a day off from his damn disease.
It’s exhausting. And it’s whole heartedly worth it because he is our Jude. Because he is our light. Because he has already shed light on this world and continues to do so.
Each year come June, we walk in honor of his struggle and our struggle. We ask for gifts from family and friends to the Cystic Fibrosis Foundation because they are miracle workers and hope givers. Because they have made it so the life expectancy of Jude’s disease has gone from 10 to 18 to 30 to about 38 and because they are on the verge of life altering drugs that will hugely impact Jude’s quality of life.
So know that if you choose to give, you are giving into a source of great hope. Of great potential. That your gift will truly have a long, life giving impact on our son. That in a year or two when I write this letter, we might say that miraculous things have happened and it was because of you.
We are gathering a strong team this year to come and support us on June 1st in Poulsbo and walk by our sides. Your gift in any amount or your company at the walk helps boost us as a family so we can stay vigilant, stay strong and stay the course UNTIL IT”S DONE!
Big love and gratitude , Lexi, Chris and Jude