Amanda Ferree

My name is Amanda Ferree and my son Miles is one of the 40,000 Americans living with Cystic Fibrosis. Cystic Fibrosis (CF), a genetic disease that causes excess mucus in his lungs, pancreases, and intestines.  It is incredible what a second grader living with an incurable disease is capable of accomplishing.  So many of his accomplishments are attributed to Trikafta, a life changing medication that was funded by the Cystic Fibrosis Foundation.

Many of you know our story by now.  As a baby Miles had extensive GI issues.  He was rushed into surgery at only 8 hours old and we ended up spending over 9 weeks in the NICU. Things were complicated in his youngest years. By the time he was 2 we had had over 4 re-admissions (for ongoing GI issues.  Miles had some delays that required speech and feeding therapy until he was 5. While things have settled down, Miles still maintains an exhausting wellness routine. Every day he spends 30 minutes in the morning and 30 minutes in the evening tethered to his inCourage machine for respiratory therapy. Miles continues to need multiple daily medications, many  of which have to be shipped from specialty pharmacies.  Miles will eagerly tell you about how he takes 100 pills in only 4 days! To ensure Miles is growing at the same pace as his peer he has overnight feeds through his g-tube to supplement his daily food. Miles can already gather his supplies, set up the machine, and hook up or unhook at needed. While this seems like an impossible ask for an 8-year-old kid, this is just Miles’ normal day to day.  He is also closely monitored by the CF team in Hershey and requires quarterly visits, multiple blood draws, PFTs, and imaging throughout the year.

But all hope is not lost.  Thanks to your generous donations to the Cystic Fibrosis Foundation, multiple drug breakthroughs have occurred in Miles’ lifetime, and more are on the way. In October 2018 Miles started Orkambi, a medication funded in part by the Cystic Fibrosis Foundation. This double drug combination was one of the first to address the underlying cause of CF and not just managing the symptoms. Since starting that medication, we have avoided those unexpected hospitalizations and began to see some stable process. In April of 2022, within weeks of Miles becoming eligible, Miles started Trikafta, a triple drug combo that has been incredible.  We have even had the luxury of stopping daily nebulized treatments, but we keep them on hand incase he needs them during any illness.  Even the common cold can set him back on his progress.

From the outside looking in you would never know Miles’ struggles.  In 2022 he started dance and has had 3 recitals.  He has proven time and time again he is able to keep up with his peers. He actually won first place in a 400m race last Spring.  Without the support of the Cystic Fibrosis Foundation, he would have never reached this level of normalcy.

The Cystic Fibrosis Foundation (CFF) continues to be an amazing resource in our life. In addition to funding intensive research to improve treatments and discover a cure, the CFF provides social support. I have personally used Compass to assist with finding a grant when one of Miles’ medications wasn’t covered.  I also volunteer with the CFF created Peer Mentoring group which pairs up those living with CF and caregivers with other community members that can relate to their situation.  I’ve been fortunate to work with other mothers who are handling the stresses of their child’s new CF diagnosis and share my encouraging story but also lament over the difficult times. The CFF also contributes to the Hershey Clinic where Miles can meet with a pulmonologist, social worker, respiratory therapist, and nutritionist all in one appointment.

In 2017 my family and friends formed a Great Strides team Miles for Miles. Being able to use the Great Strides event to fundraise for the CFF means the world to our team. Miles has an amazing future ahead of him thanks to the Cystic Fibrosis Foundation’s commitment to adding tomorrows and finding a cure. We won’t stop fighting UNTIL ITS DONE, not just for Miles, but for all of those impacted by Cystic Fibrosis.

Please consider making a donation of whatever amount you can. Every dollar counts!

Help me reach my fundraising goal by donating to my 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% tax deductible.