Dean was officially diagnosed with Cystic Fibrosis at the end of 2017, after going through several sweat tests, blood tests, genetic tests, a couple hospitalizations, CT scans, X-Rays, ECGs, and doctor visits that are too numerous to count. We started this journey when we first got the call about his abnormal newborn screening test results when he was only a week old.
Dean is now five years old. He takes at least 7 medications and does airway clearance therapies throughout the day every single day that take up a couple hours of his time. He has a $20,000 vest machine that violently shakes the mucus out of his lungs to help him clear it better. When he's sick, the medications and breathing treatments increase. We have to constantly monitor his food intake, weight gain, any new or changes to respiratory illnesses. And our visits to the CF clinic every month are usually a 3+ hour affair, seeing the nurses, pulmonologist, respiratory therapist, and nutritionist, taking throat swabs, and sometimes lab draws. Fighting insurance seems like a never-ending battle. But everything that Dean does is helping him stay alive and hopefully slowing the disease progression. He never has a day off from any of this, and neither do we.
Updates for 2021: Dean been taking Kalydeco for awhile now (after positive results from a CFF funded theratyping trial a couple years ago), and it continues to be such a life-saving drug for him. He's been the healthiest he's ever been since starting this medication. And although we've been super isolated from everyone and taking every precaution necessary due to COVID-19, the silver lining has been that Dean hasn't gotten sick in a YEAR. He continues to stay healthy and thrive, and his weight gain has never been better! Being isolated has been really tough for our family, and has taken a mental and emotional toll on us all. But we keep reminding ourselves that we're healthy, and Dean is healthy, and that's what is most important right now.
But we're not done yet... we need your support and donations to help fund other drugs to help extend Dean's life. CFers are facing antibiotic resistance, lung infections and inflammation which causes further damage, as well as issues with other organs. And Dean's mutations still aren't on the FDA approved list for Kalydeco or any of the other modulator drugs, so getting insurance re-approval for this drug every year is always a stressful situation. CF can affect every part of your body. One of Dean's mutations is also a Class 1 mutation, and there are currently no drugs out there to help fix this.
CF is a part of Dean's life, and ours, but we try to make sure this is something that does not define him. We fight this terrible disease head on, as a family and as a team.
Your donations will help Dean, and others, by helping fund research and development, and create new drugs that will increase his life expectancy and prevent or slow down the worsening of symptoms. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease.
Your gift is 100-percent tax deductible, and a lot of companies will also do matching donations!
Thank you for all of your support, love, and donations. Hopefully one day we can make CF stand for "Cure Found."
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.