Hi Family and Friends!
This year Arlo has been able to begin Trikafta (the miracle CF drug), we are so grateful that Arlo will be able to grow up on a medication that improves the life of those living with cystic fibrosis. Despite Arlo beginning Trikafta, we have had our biggest health scare since Arlo was in the NICU. On two different occasions this year, Arlo has a partial lung collapse and lung infection. During these times, Arlo had to complete four treatments a day. That equates to 80 minutes of breathing treatments. That's a lot for anyone to go through, much less a three-year-old. Amazingly, Arlo was able to clear these infections and collapses with increased treatments and no extended hospital stays. Furthermore, even though Arlo was homebound this year. Arlo still managed to contract both COVID-19 and RSV. It certainly has been a rollercoaster this year with Arlo's health. We are beyond grateful for Trikafta and it has helped Arlo to gain weight and fight off infections more easily. However, the medication has some unfortunate psychological effects and we are not giving up our fight for him until a cure is found!
Arlo is now 3.5 years old. He loves playing outside more than anything. Arlo enjoys skiing, riding his bike with his neighbor Katalina, playing monster trucks with his pal River, walking his dog, playing at the park, and constantly searching for adventure.
Cystic fibrosis only affects about 40,000 people in the United States. As a result of the low numbers of individuals living with cystic fibrosis, the majority of research, advancements in medication, and treatments come from the cystic fibrosis foundation instead of the state or federal government. This means that every dollar donated directly affects Arlo's future. Thank you for your time, and we truly appreciate you and all of your support.
Love,
Arlo, Ben, and Lizzy
Arlo's Daily Fight
- 25 pills per day that he takes to absorb fat and nutrients from his food.
- 30 minutes of Airway clearance treatments a day
- 40 minutes of breathing treatments a day
- 6 different medications taken daily
- Appreciation for all the joy in between :)
Ways You Can Help
Join a Team Arlo event:
To Donate: Click on the 'Donate to Team Arlo" button at the top of the page. Thank you so much for your support.
JOIN TEAM ARLO!!!
Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.
As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.