Roses for Ryan

For those who don't already know, my husband Ryan was diagnosed with a terminal lung disease, Cystic fibrosis shortly after he was born. At this time, it was rare someone with CF would live past middle school. When I started dating Ryan in 2005, the life expectancy was raised to 18. Today, thanks to medical research, new treatments and medications, that number has now increased to the mid 40's. A few years ago, the closest thing to a cure was found. A new medication Trikafta could help those with CF and the most common mutation of this disease, the F508del mutation. This mutation affects 90% of the population with Cystic Fibrosis. Ryan was born with this mutation, however he was also born with another rare mutation that trikafta does not help treat. There are more than 1,700 mutations of Cystic fibrosis! Trikafta still is not a cure, but it does help those with this gene improve their lung function and add more years onto their life. Ryan still has another mutation that needs help, as well as all the others with the remaining 1,699 mutations that continue to attack their lungs on a daily basis.

What some people may not realize is that Cystic fibrosis does not just affect the lungs. Yes, it fills the lungs with mucus causing breathing to be hard, multiple infections, scarring, and permanent damage. Some may end up needing a lung transplant. CF can also, and has caused Ryan to need sinus surgery, gallbladder removal, and become diagnosed with Cystic fibrosis diabetes, requiring him to take daily insulin. Along with this, it also affects the bones, causing Ryan to have osteopenia and the beginning stages of arthritis.

For those who have helped the past several years, THANK YOU. You have gotten us to where we are today! 

If you wish to continue to help, or are wondering how to - there are a few ways! You can register to walk and join us June 1 at Independence Grove Forest Preserve in Libertyville. ****PLEASE NOTE: NEW LOCATION, DATE, & TIME THIS YEAR**** (NORTHWEST SUBURBAN GREAT STRIDES COMBINED WITH ANOTHER CHAPTER GOING FORWARD.) Can't make this day? There are other walks in the surrounding areas, including Naperville and Chicago. You can spread the word to those you know, invite them to the walk, and help raise awareness. There are many who have still never even heard of Cystic Fibrosis! You can also make a donation (no amount is too little!) as well as rally your troops to help raise money as well. :) 

From the bottom of our hearts - thank you for taking the time to read this and for adding many years to my husband's life. He is my best friend and every day I am honored such a strong, full of life, positive and determined person has chosen me to spend his years with.

xoxo 

Heather

Details:
***NEW LOCATION***
***NEW DATE & TIME***


June 1st in Libertyville
Independence Grove Forest Preserve

9:00 AM Check in / 10:00 AM Start time

Thank you party at our house in Streamwood at 3:00 PM afterwards.