My Xtreme Hike Story
Mackenzie Meinhold
Fundraising for North Carolina Fall Xtreme Hike
Mackenzie Meinhold
Our sweet Jones was diagnosed with CF just a few weeks after birth. We immediately began a rigorous routine of medication, treatments and supplemental formula for extra calories. I still remember how overwhelming the first visit to the CF clinic was. There were so many facets of the disease to understand, and the expected lifespan of those with CF was crushingly short.
Luckily we had the Pattons, which is just amazing because only around 40,000 people in the U.S. are living with CF. Ada is just a bit older than Jones, and Sean and Becca had recently been in our position, navigating life with a newborn while understanding this diagnosis. We couldn’t have asked for better support during this time and over the last few years.
Now, Jones works very hard at managing his CF, though he doesn’t know it yet. We have quarterly visits to the clinic in Salt Lake. He does two 30 minute sessions on his vest each day, along with a different inhaled medication. And although he once tested sufficient for pancreatic enzymes, he is back into the lower than normal range so we’re continuing to give him enzymes before every snack and meal, which is 13 pills a day. On top of that he’s on a modulator called Kalydeco (a medication we’re EXTREMELY thankful for), which is twice a day. Kalydeco is what has kept him so healthy over the last 3.5 years, but it comes at a price tag of over $300k a year.
As I’ve become more involved with the Cystic Fibrosis Foundation in Salt Lake through our Parents’ Advisory Council, I’m astounded at how dedicated their team is to fighting this disease. The Foundation funds research, along with a number of other things, that I truly believe will one day result in a cure for CF.
Thank you from Jones and Ada and the entire CF community. We couldn’t do it without you.
Luckily we had the Pattons, which is just amazing because only around 40,000 people in the U.S. are living with CF. Ada is just a bit older than Jones, and Sean and Becca had recently been in our position, navigating life with a newborn while understanding this diagnosis. We couldn’t have asked for better support during this time and over the last few years.
Now, Jones works very hard at managing his CF, though he doesn’t know it yet. We have quarterly visits to the clinic in Salt Lake. He does two 30 minute sessions on his vest each day, along with a different inhaled medication. And although he once tested sufficient for pancreatic enzymes, he is back into the lower than normal range so we’re continuing to give him enzymes before every snack and meal, which is 13 pills a day. On top of that he’s on a modulator called Kalydeco (a medication we’re EXTREMELY thankful for), which is twice a day. Kalydeco is what has kept him so healthy over the last 3.5 years, but it comes at a price tag of over $300k a year.
As I’ve become more involved with the Cystic Fibrosis Foundation in Salt Lake through our Parents’ Advisory Council, I’m astounded at how dedicated their team is to fighting this disease. The Foundation funds research, along with a number of other things, that I truly believe will one day result in a cure for CF.
Thank you from Jones and Ada and the entire CF community. We couldn’t do it without you.
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