3-Year-Old Desi Has Family, Friends, and a Nationwide Network by Her Side
After learning that that their 10-day-old daughter, Desi, was diagnosed with cystic fibrosis, Jamie and Ross resolved that they would do all they could to share her story and find a cure.
“We went into warrior mode,” said Jamie. “We made a promise that we would do everything possible, in any way possible, to help her thrive, survive, and live the dreams that she decides she wants to live.”
Jamie’s Great Strides team, “Driving Miss Desi” has evolved into an apparel and goods brand committed to telling Desi’s story, encouraging others to passion fundraise, and to find a cure. After just two years, the team has brought in over $94,000 to the CF Foundation and has high aspirations for 2018.
“Putting ourselves out there has allowed us to see how others who are not directly affected -- who don’t ‘have’ to fight this disease like we do – can step up.”
Desi, despite the treatments she endures daily, is an extremely delightful and compassionate child – mentioning her friends and their family by name in prayer. “She takes everything in stride and once we explain to her what’s happening and why it’s happening, she’s very compliant. Even at such a young age she’s very empathetic and respectful of others, which is exactly how we want her to be with or without CF.”
Jamie encourages families that ask how they can join in the fight against CF to join their local Great Strides walk. “Even if it’s just one person, representation at a local walk is huge. Having a National Family Team puts your child’s face in a different city and tells their story in a different part of the country. You never know what can come from that.”
With 10 walks last year, and 12 walks planned for 2018, Team Driving Miss Desi has no plans to take a pit stop anytime soon.