in 2017 we ( The Roe Crew) welcome our son Ignacio ( Nacho ), he was diagnosed with Cystic Fibrosis thru the newborn screening that is require by the State of Kentucky... and boy are we grateful for it! Those first few days and month were hard and we are forever grateful for the CF Foundation and their guidance and support.
Fast forward to 2022- Wow! SO much as happen!!!!
2019 - Nacho was part of a N-1 Study conducted by the Cincinnati Children's Hospital. This study was able to see if his Genes would react to any of the gene modulator out there.... well it did! his genes reacted well to Kalydeco and what a difference this has made! We would have never been able to afford a study like this and thanks to the foundation and their money that goes to research we were able to - well now his rare mutation is added to approved genes so other kiddos with his gene can benefit from this medication.
2020 - This is the year NO ONE like to talk about - but let me say that while Covid-19 alter the lives of so many this is the HEALTHIEST YEAR nacho has ever had! and while we were home when we had to... nacho was able to stay in daycare and start preschool!
2021- what a sweet year for nacho! He was asked to be the great stride ambassador for the KY/WV chapter! we all had so much fun bringing awareness to this disease and the amazing things this chapter is doing. 2021 health wise was a little challenging - he had RSV and MRSA twice! we tried to eradicate it and since October his MRSA is behaving....
2022 Nacho is not a winter lover but is hanging and counting days till spring, he is so looking forward to being on the water ridding on the boat and fishing! So far this year he had Covid and Flu all at once and you would have never known, his smile and sweet spirit never changed! I have always said - there is NOTHING that can Stop Nacho...Not even CF. In fact as a family we have always said that CF doesn't get to define who Nacho is , rather, CF just gets to ride along!
Please consider in giving and joining our team! We walk so we are a step closer to find a cure!
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let's make CF stand for Cure Found!
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.