My Great Strides Story
This is Everlee Rose. Looking at her you would never know she has a life threatening disease called Cystic Fibrosis (CF).
Everlee was officially diagnosed with Cystic Fibrosis on 1/14/21. We are very blessed that Everlee’s case is a very mild case at this point and Everlee has minimal to no symptoms. We still do plenty of preventive care with daily meds and her Vest Treatment done twice a day.
Comes out I am a carrier of the most common CF Mutation F508del and Justin is also a carrier of the CF mutations, but with different variants, R74W, D1270N, and V201M. When both parents are carriers, there is a 25% chance the child will be positive for the disease.
Did you know there are only about 40,000 people with this disease in the US and only around 80,000 in the world? With such small numbers, there is little funding for research of this disease and most come from donations to the Cystic Fibrosis Foundation. Cystic Fibrosis has come a long way in the past five years and we pray it keeps going till there is a cure.
Any donations would be greatly appreciated or even a prayer for our baby girl. All donations will go straight to the foundation for research.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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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.