Our Wish for Desi
August 1, 2015 was a special day to my husband Ross and me, our daughter, Desi, was born. Following her birth, we began adjusting our lives to all that a baby brings- How do I establish a routine? Do we have enough diapers? How much coffee can this pot make? Then on August 10 all priorities shifted and our lives changed forever. We were told our little baby had cystic fibrosis, a life threatening genetic disease that affects the lungs and digestive system. CF causes a build-up of thick sticky mucus to form in the lungs that progressively limits the ability to breathe. There is no cure and the average median life expectancy is 38 years old is what they told us.
It was the first time we as parents ever wanted to take something away from our child. We went home to absorb all the difficult news that had just been dumped in our laps. It was as if we had already lost years of memories with Desi and she was only 10 days old. Plus, this disease was completely new to us. Ross and I didn’t know how to care for a child that had special needs, daily special needs at that. We felt powerless and frightened but under it all we were silently determined to learn and ‘check every box’ we needed to to help her thrive.
At the beginning, it felt like time moved at half speed. Like when you start a new job and your just counting. down. the. hours until you can leave and fill your brain with something your familiar with. It felt as if that time would never come though. Being a new parent comes with it’s own series of challenges and then add on a disease where each daily CF medicine and treatment must be executed in a very specific way, to ensure it is beneficial,and it is easy to feel overwhelmed. However, we slowly began to gain our ‘sealegs’ and feel comfortable in how we were doing it as well as why we were doing what we were doing it.
Every day for Desi is filled with multiple breathing and airway clearance treatments, 18 pills to help absorb fats and nutrients from food, a diligent high calorie diet to help her body gain weight and regular exercise to strengthen her bones, and help increase lung function. All of these extra steps use hours that could otherwise be spent playing, running and acting like a typical toddler her age.
It can also be very isolating as it is the only disease as individuals with cystic fibrosis cannot be around each other for risk of spreading a variety of very harmful bacteria between each other. Germs can stay in the air as droplets and then be inhaled in by another individual with CF who then grows that germ in their lungs. Making it impossible for Desi to have playdates with other kiddos who are experiencing the same life she is.
While Desi is compliant with the treatments, and has up until this
time been able to avoid hospitalization, doesn’t mean that each day isn’t
a fight for her life. Everyday takes a lot of work to keep her on this trajectory.
With all of that in mind we both promised each other and Desi that we would do everything in our power to give her what she needed, we’d share her story and work to fund a cure for cystic fibrosis! Unfortunately, with CF being an orphan disease (less than 200,000 live with it) it doesn’t receive government funding for research. Every medication and treatment that has come along for Desi is here because of individual donations and corporate sponsorships sent to the Cystic Fibrosis Foundation, the leader in funding a cure. With this knowledge, Ross and I knew we would have to bring money in to help Desi, and others living with cystic fibrosis. That is where the name ‘Driving Miss Desi’ was born. We were going to Drive Miss Desi to a Cure for Cystic Fibrosis! It was the name of our team for many fundraising events and has morphed into a business for us and another vehicle to fund research while bringing awareness.
Driving Miss Desi is an apparel and goods brand committed to telling Desi’s story, encouraging others and illuminating a positive message of hope for more breaths and a cure. For every item purchased money is donated to the Cystic Fibrosis Foundation and also utilized for the expenses that come along for Desi with having Cystic Fibrosis. It is our hope that this money will further increase the life expectancy and improve the quality of life, for Desi, and those battling this disease every day.
Of course we would say cystic fibrosis is not what we would have wanted, but we now notice and appreciate all the ‘little’ moments in life more than we would have before…..every breath is a blessing.
We appreciate you taking the time to shop our business, share in our goal and add more tomorrows to Desi's life. For us, each purchase is personal and adds more gas to the tank that will Drive Miss Desi to that cure!
With appreciation and hope for a cure,
Jamie and Ross