On August 1, 2015 our good friends, Jamie and Ross, welcomed their daughter, Desi, into the world. At 10 days old she was diagnosed with cystic fibrosis, a life threatening genetic disease that coats the inside of her organs with thick sticky mucous. Cystic fibrosis hits the lungs extra hard leading to persistent lung infections and progressively limiting the ability to breathe.
In looking at Desi you would never know she had cystic fibrosis. She runs, plays and climbs but on the inside her body struggles to operate. There is no cure for cystic fibrosis so we walk, and fundraise, to give her a longer life and More Tomorrows!
Learn more about her day to day life from her parents below....
Welcome to our Road Trip!
Hi Friends! Thank you for joining us in our fight against cystic fibrosis and sharing in our goal for More Tomorrows for Desi! We are beyond grateful to have so many come together in support of her. Your friendship and firm commitment has been incredible...together, we've raised over $90,000 and seen two drugs become available for many of those battling cystic fibrosis! Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. Since our last Great Strides Desi has started regular gymnastics classes, perfected her tricycle skills and fully mastered swallowing pills. Recently,we added a new medication to Desi's regular treatment routine. Her pulmonologist reminded us that cystic fibrosis is consistently impacting her body even though we do not currently see the impact. Just because she doesn't display more direct symptoms doesn't mean that CF isn't making its mark on her. Cystic fibrosis is quiet and stealthy. Everyday we take numerous steps to help reduce its impact and stave off hospital stays. 775- how many pills Desi swallows every month. She takes these before each meal in order to give her body the ability to absorb fat and nutrients from food. She must eat a high calorie diet as putting on weight is a constant challenge and is directly linked to her lung function. 60- how many minutes a day are devoted to Breathing Treatments (120 minutes/day when sick.) 60- how many minutes a day are devoted to Airway Clearance Treatments when healthy.(120 minutes/day when sick) To do this she wears a vest and is connected to a machine that will shake her to help move the mucous in her lungs. 47- average life expectancy for someone who has cystic fibrosis (It was 38 when Desi was born- proof that progress is being made!) 8- how many medications and supplements she is on to help her body function. 2- years old, how old Desi currently is. ________________________________________
Everyday is a push to help Desi's body operate and to keep her healthy.
Come join us at Great Strides and walk to celebrate how much progress has come about and, through our work together, how much is going to happen!! It is a fun, family-friendly morning spent walking with like-minded friends and encouraging those living with cystic fibrosis and their families. Come join our 'road trip'! Support us by making a donation to our Great Strides fundraising campaigns today and help Drive Miss Desi closer to a CURE!
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.