Sailor's Backstory
Hi, I'm Sierra, and Sailor is my younger sister. In fact, she is the youngest of our 5 siblings. So believe me, Sailor was running with the big kids as soon as her feet touched the ground.
She has always been a big ball of energy just waiting for the next challenge -- no matter how big or small, silly or serious, rough or tumble. And when you're as full of as much life as Sailor is, you are bound to get a few bumps and scratches.
Sailor has broken 10 bones and had 8 concussions (based on what we're able to remember).
While many of the stories are full of funny memories, the injuries she's sustained over the years have triggered an underlying condition called Complex Regional Pain Syndrome (CRPS).
What is Complex Regional Pain Syndrome (CRPS)?
CRPS is a condition caused by imbalance and malfunction of the autonomic nervous system. Medically speaking, it is the most painful disease known to man – rating higher than both childbirth and amputation on the McGill Pain Index.
Click here to learn more about CRPS and CRPS awareness efforts
Sailor's Life with CRPS & Level 8 Pain
Since she was 12 years old, Sailor's had severe, constant, and burning pain throughout her body with hot spots of pain in her shoulders, back, hips, and knees. Now 17 years old, that's 7 years with pain every single day.
Her "normal" state is categorized at a pain level 8 out of 10. It is so intense she can no longer be independent.
She's unable to do things that most take for granted, like walking far distances, going to school, playing on her Lacrosse team, or hanging out with her friends.
It has been a long road to determine this diagnosis, and the many treatment methods we've tried so far have not provided any relief.
Sailor's Hope For a Level 0, Pain Free Future
However, we are filled with excited because Sailor recently had a huge breakthrough!!!
Since April 2021, Sailor has been in an intensive Neurologic Rehabilitation program at The Spero Clinic in Arkansas, where she's receiving personalized, whole-body care using multiple tools and techniques designed to restore balance to her central nervous system.
It's been a bit of an adjustment for everyone. The program brings Sailor to her physical and mental limits all while being an 11 hour car ride from her home and friends in Madison, WI.
But it's all been worth it since Sailor has finally felt some relief!
While her pain levels fluctuate for her various hot spots depending on the day... through her hard work with the program, she got her hips to a level 0 for a whole day! This is the first pain relief she has felt in a long time and an amazing sign her hard work with the program is paying off.
We are hopeful and encouraged by her personal improvement and by the stories of others like Sailor who graduated the program with a consistent pain level of 0 throughout their whole bodies.
How You Can Help
Unfortunately, the majority of insurance companies do not cover this care. Any support provided will go toward funding Sailor's treatment journey at The Spero Clinic.
Thank you for your support!
Hi, I'm Sierra, and Sailor is my younger sister. In fact, she is the youngest of our 5 siblings. So believe me, Sailor was running with the big kids as soon as her feet touched the ground.
She has always been a big ball of energy just waiting for the next challenge -- no matter how big or small, silly or serious, rough or tumble. And when you're as full of as much life as Sailor is, you are bound to get a few bumps and scratches.
Sailor has broken 10 bones and had 8 concussions (based on what we're able to remember).
While many of the stories are full of funny memories, the injuries she's sustained over the years have triggered an underlying condition called Complex Regional Pain Syndrome (CRPS).
What is Complex Regional Pain Syndrome (CRPS)?
CRPS is a condition caused by imbalance and malfunction of the autonomic nervous system. Medically speaking, it is the most painful disease known to man – rating higher than both childbirth and amputation on the McGill Pain Index.
Click here to learn more about CRPS and CRPS awareness efforts
Sailor's Life with CRPS & Level 8 Pain
Since she was 12 years old, Sailor's had severe, constant, and burning pain throughout her body with hot spots of pain in her shoulders, back, hips, and knees. Now 17 years old, that's 7 years with pain every single day.
Her "normal" state is categorized at a pain level 8 out of 10. It is so intense she can no longer be independent.
She's unable to do things that most take for granted, like walking far distances, going to school, playing on her Lacrosse team, or hanging out with her friends.
It has been a long road to determine this diagnosis, and the many treatment methods we've tried so far have not provided any relief.
Sailor's Hope For a Level 0, Pain Free Future
However, we are filled with excited because Sailor recently had a huge breakthrough!!!
Since April 2021, Sailor has been in an intensive Neurologic Rehabilitation program at The Spero Clinic in Arkansas, where she's receiving personalized, whole-body care using multiple tools and techniques designed to restore balance to her central nervous system.
It's been a bit of an adjustment for everyone. The program brings Sailor to her physical and mental limits all while being an 11 hour car ride from her home and friends in Madison, WI.
But it's all been worth it since Sailor has finally felt some relief!
While her pain levels fluctuate for her various hot spots depending on the day... through her hard work with the program, she got her hips to a level 0 for a whole day! This is the first pain relief she has felt in a long time and an amazing sign her hard work with the program is paying off.
We are hopeful and encouraged by her personal improvement and by the stories of others like Sailor who graduated the program with a consistent pain level of 0 throughout their whole bodies.
How You Can Help
Unfortunately, the majority of insurance companies do not cover this care. Any support provided will go toward funding Sailor's treatment journey at The Spero Clinic.
Thank you for your support!
Organizer and beneficiary
Lori Livesey
Beneficiary