My Xtreme Hike Story
Sean & Matt Patton
Fundraising for North Carolina Fall Xtreme Hike
Sean & Matt Patton
When Ada was 11 days old, we received a call from the pediatrician. The newborn screening results were in and our daughter had something called cystic fibrosis. He said he was sorry and that the local Cystic Fibrosis Clinic would be in touch.
When he hung up, we took to the internet. As we held our tiny newborn, we read about predicted life expectancy (in the 40s at the time), frequent hospital stays, and double lung transplants. We were devastated.
The first sign of hope came at Ada’s first CF Clinic appointment. Right away we learned that the future is bright for many CF patients. A genetic modulator – just FDA approved in 2019 (Ada was born in 2020) – was changing the game for those who qualified for it. We would hold onto hope until she was old enough to begin taking it.
The days before the modulator were hard – hearing Ada cough through the night, wondering if we’d end up in the hospital, imagining the long-term damage that was already occurring to her tiny lungs.
When she qualified for her first genetic modulator, we quickly saw the effect and began to really believe in that “bright future.”
Ada still takes medication every time she eats, she wears a “jiggle” vest and does nebulizer treatments twice a day, does her inhaler puffs, and takes her genetic modulator morning and night. She coughs so much less, but it grips you when she does. We don’t have guarantees, but we don’t borrow any worries from tomorrow (a mantra her CF doctor gave to us in the early days of her diagnosis).
There are others with CF who are not so lucky. Some with mutations that don’t qualify for a modulator, some who don’t tolerate one, others with damage too far gone, and those who don’t have access to treatments.
It was a crazy twist of fate when we received a call from our close friends that their newborn son, Jones, likely had this rare disease as well. Becca took the call from his mom, Mackenzie, and tried to explain the miracle of genetic modulators. When she hung up, she thought “Please let him qualify for one.” Knowing that if he did not, the hope she had just tried to convey was a lie. We are so relieved that he is thriving.
Our families and our amazing friends are now in this fight together. We are so grateful for every member of Ada and Jones’s Fight Club.
- Sean
When he hung up, we took to the internet. As we held our tiny newborn, we read about predicted life expectancy (in the 40s at the time), frequent hospital stays, and double lung transplants. We were devastated.
The first sign of hope came at Ada’s first CF Clinic appointment. Right away we learned that the future is bright for many CF patients. A genetic modulator – just FDA approved in 2019 (Ada was born in 2020) – was changing the game for those who qualified for it. We would hold onto hope until she was old enough to begin taking it.
The days before the modulator were hard – hearing Ada cough through the night, wondering if we’d end up in the hospital, imagining the long-term damage that was already occurring to her tiny lungs.
When she qualified for her first genetic modulator, we quickly saw the effect and began to really believe in that “bright future.”
Ada still takes medication every time she eats, she wears a “jiggle” vest and does nebulizer treatments twice a day, does her inhaler puffs, and takes her genetic modulator morning and night. She coughs so much less, but it grips you when she does. We don’t have guarantees, but we don’t borrow any worries from tomorrow (a mantra her CF doctor gave to us in the early days of her diagnosis).
There are others with CF who are not so lucky. Some with mutations that don’t qualify for a modulator, some who don’t tolerate one, others with damage too far gone, and those who don’t have access to treatments.
It was a crazy twist of fate when we received a call from our close friends that their newborn son, Jones, likely had this rare disease as well. Becca took the call from his mom, Mackenzie, and tried to explain the miracle of genetic modulators. When she hung up, she thought “Please let him qualify for one.” Knowing that if he did not, the hope she had just tried to convey was a lie. We are so relieved that he is thriving.
Our families and our amazing friends are now in this fight together. We are so grateful for every member of Ada and Jones’s Fight Club.
- Sean
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