My Xtreme Hike Story
Eric Donaldson
Fundraising for North Carolina Fall Xtreme Hike
Eric Donaldson
Our daughter, Callie, was diagnosed with Cystic Fibrosis as an adult roughly 2 years ago after years of doctor’s visits, lab tests, various procedures, hospitalizations, etc. We finally learned that she has a rare, uncharacterized variant in her CFTR gene that greatly impacts her pancreas and has led to many, many respiratory infections over the years, with the problems getting worse as she ages.
We had never heard of a delayed diagnosis for CF until hers came, and we found ourselves confused, frustrated, powerless, and afraid. We reached out to the Cystic Fibrosis Foundation and quickly realized what a fantastic organization it is. They provided information, mentors, connections in the town she lived in, and resources for her that have been unbelievably helpful.
Unfortunately, in Callie’s case, her pediatrician noticed that she was “failing to thrive” as a teenager, and that sent us down a long and agonizing road for many years treating an eating disorder.
Please, please, please… if your child is diagnosed with an eating disorder insist that they first test for CF! There are over 2000 variants reported in the CFTR gene (some studies have reported more than 4000) and at least 1 in 31 of us are carries of one of these variants. This disease is much more common than previously understood.
There is currently no cure for cystic fibrosis and too many people with CF die young. In Callie’s case, she still struggles as her medical team dials in the appropriate enzymes, nutrition balance, and lung treatments.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
This fight is personal for me, and I appreciate your support as we raise funds to support an organization that has helped thousands. If you’d like to learn more about the disease and the organization, I recommend checking out the book Breath from Salt!
Thanks,
Eric
We had never heard of a delayed diagnosis for CF until hers came, and we found ourselves confused, frustrated, powerless, and afraid. We reached out to the Cystic Fibrosis Foundation and quickly realized what a fantastic organization it is. They provided information, mentors, connections in the town she lived in, and resources for her that have been unbelievably helpful.
Unfortunately, in Callie’s case, her pediatrician noticed that she was “failing to thrive” as a teenager, and that sent us down a long and agonizing road for many years treating an eating disorder.
Please, please, please… if your child is diagnosed with an eating disorder insist that they first test for CF! There are over 2000 variants reported in the CFTR gene (some studies have reported more than 4000) and at least 1 in 31 of us are carries of one of these variants. This disease is much more common than previously understood.
There is currently no cure for cystic fibrosis and too many people with CF die young. In Callie’s case, she still struggles as her medical team dials in the appropriate enzymes, nutrition balance, and lung treatments.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
This fight is personal for me, and I appreciate your support as we raise funds to support an organization that has helped thousands. If you’d like to learn more about the disease and the organization, I recommend checking out the book Breath from Salt!
Thanks,
Eric
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