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 at NTC Park at Liberty Station on Saturday May 16th, so please come out 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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.