My Xtreme Hike Story
Stephen Meinhold
Fundraising for North Carolina Fall Xtreme Hike
Stephen Meinhold
We found out our little guy Jones had Cystic Fibrosis when he was only a few weeks old, after it was flagged on a newborn screening. within a week or so the CF clinic at Primary Children's Hospital here in Utah welcomed warmly to our first of many clinic visits, and has now become our extended family in our CF journey. I can remember the first few visits being overwhelming, learning how to give 40 minutes of treatments and multiple rounds of meds daily to eat to a newborn. A stand out memory was the statistic of a shortened life span for my weeks old baby, it so much to wrap our head around.
Fortunately, 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.
We decided Jones' health was top priority, so I left my career as a professional climbing route setter to stay home with him, as daycare seemed like too much to navigate at the moment. We settled into our routines with "bop bops" which has turned into vest treatments twice a day for 30 mins with Ms. Rachel, and "chompers", his meds on a spoon of applesauce before any meal or snack. He also takes a modulator med, Kalydeco, twice a day which is a life changing medicine that he was fortunate to start at 4 months old.
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.
Fortunately, 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.
We decided Jones' health was top priority, so I left my career as a professional climbing route setter to stay home with him, as daycare seemed like too much to navigate at the moment. We settled into our routines with "bop bops" which has turned into vest treatments twice a day for 30 mins with Ms. Rachel, and "chompers", his meds on a spoon of applesauce before any meal or snack. He also takes a modulator med, Kalydeco, twice a day which is a life changing medicine that he was fortunate to start at 4 months old.
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.
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