Our story with Cystic Fibrosis (CF) started shortly after Aug. 30 2013 when our son Riley was born. My husband Eric and I had driven 30 hours straight across the country to get there for his birth. It was unlike any feeling in the world, we were finally a complete family! A few days later we learned that Riley had Cystic Fibrosis (CF). Doctors and Social workers questioned if we would move forward with his adoption, there was no question for us, he was our son! We know that God has an amazing plan for us as a family. Riley has brought so much joy and happiness to our lives, that is just one of the reasons why we fight so hard to raise money to find a cure, for him and all those other warriors like him fighting CF.
Riley went three and a half years without having to be hospitalized but then things started getting more complicated with his first hospitalization in Feb. 2017. He has had two two week hospitalization stays, numerous intestinal blockages and has been on antibiotics more time than most people are in their entire lives and he is only 6. He doesn’t act 6…recently when I groaned ‘I’m horrible at this track!’ Riley answered “Mom, your just going to have to PERSEVERE!”. I really wish my little boy didn’t know what the word persevere means…at 6 years old …at least his attitude is great…he had us all laughing even though he was in doing his 3rd treatment of the day. We were on DAY 21 of 3-4 treatments a day to try to get him over a cold and keep him out of the hospital!
Riley is 6 now and in 1st Grade. Last September he was able to start on Orkambi one of the new drugs specifically developed from the funds raised because of past Great Strides walks (Thank you!) And we believe that is why he has not had to miss school or been back in the hospital since starting the medication. He has been able to participate in dance, basketball and soccer at school and is able to keep up with his treatments, school and activities in spite of CF. So please come join us in the fight to keep bringing us new medications to help.
Even with the new medication and all the stuff he can do, he looks and acts great when we are out and about but the coughing and bringing stuff up and difficulty at night are among the things you don’t see. The other things you don’t usually see….He takes 18 to 26 Enzyme pills every day before he eats to help him digest his food and get nutrients from the food he eats, he take an additional 15 pills/powders/sprays medications AND does a minimum of two 20 minute Smartvest treatments with puffer inhalers, 2 Hypertonic Saline Nebulizer treatments, 1 Pulmozyme Nebulizer treatment 2 TOBI Nebulizer treatments (28 days on then 28 days off because he cultured Psudemonus bacteria in his lungs), does 2 Nasal Saline Rinses, sprays Flonase up his nose and takes a TON of Miralax EVERYDAY….even on Christmas and his Birthday. ALL of that is on HEALTHY days…on sick days he does EXTRA (4-6) Vest Treatments and Nasal Rinses and could have antibiotics added into the mix. He is a true little warrior but he needs help, YOUR HELP. He needs a cure and you can help make that cure closer to being found by joining our team and/or making a donation to our Great Strides team.
By becoming a member of our team and/or making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising if you choose to. Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Our walk this year will be on Saturday May 15th, so please get active and join us!
If you can’t walk with us then please support us (and Riley) by making a donation to our Great Strides fundraising campaign today! Help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
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.