My Great Strides Story
Myah has had a very hard 7 years filled with dozens of surgeries and hospital stays. Hundreds of doctor visits and countless amounts of bloodwork. She is one of the toughest kids I know. Myah has overcome so much and is truly amazing in her spirit and how she handles life with this disease. She takes over a dozen medications a day, vest therapy up to 4x a day (3-5hrs), and has a feeding tube for supplemental nutrition to help keep her weight and BMI up. She has severe sinusitis and 3 of her dozens of surgeries has been sinus surgery to give her some relief and help prevent more issues in the lungs. Myah also has to be careful what she touches or breathes in. Many surfaces and areas carry bacteria that can set up in her lungs and cause serious complications and lung damage. Myah was hospitalized most of the first 2 years of her life and many many more times up to present day. She has PTSD from being in a hospital setting so much that she panics when near a hospital or doctor's office. Myah's bloodwork has to be monitored closely due to some of the medications and what Cystic Fibrosis can do to the liver, pancreas, and lungs. Her recent bloodwork was high in some levels that are associated with liver damage. Myah has been on Trikafta for 2 years and it has helped her gain and maintain her weight. This medication can harm the liver and if it starts to damage the liver, she will be unable to take it. This medicine is helping save her life and give her a longer life expectancy. Myah was born in 2016. We were told the life expectancy was 35. It has went up a few years to those who were born in 2017+. We need more research to help find a cure. Noone deserves to be told they won't outlive their parents.
C.F. will one day stand for CURE FOUND!
Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues and sometimes lung and/or liver transplants.
There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF. The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.
Your support makes a difference.
By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.
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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.