Help Hayleigh Heal
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Freak accident: an incident occurring under highly unlikely or unusual circumstances. That is what you call a broken bone that turns into a life-altering, never ending, suicide disease.
Complex Regional Pain Syndrome(CRPS), formerly known as Reflex Sympathetic Dystrophy and nicknamed The Suicide Disease, is a nerve disorder that is nearly impossible to define because every person that has it has a different experience, but everyone has intense pain and a long list of mind boggling symptoms. For me, it means I can’t write more than a sentence without sharp, burning pain in my hand and arm. The sun, combined with high temperatures, gives me itching, burning, rashes on the exposed skin. Water, especially when cold, rewards red welts that turn into swollen, feverish limbs that throb. My senses are heightened and altered: “too much” light gives me a significant headache, I can feel the stitches in my clothes and can no longer wear certain things like long sleeve shirts and bras with straps, sound isn’t just heard but felt as well, etc. I’m constantly dizzy and am no stranger to vertigo spells. And list continues..
CRPS is the highest rated condition on the McGill Pain Scale (43/50).
What happened:
August 2012- One day at school, I was pushed down and caught myself on a concrete block. Within the next week, my parents took me to Dr. Richardson at AMMC Paragould Arkansas. My left hand and wrist were swollen, purple, cold, and clammy, so the orthopedic surgeon decided to do a series of x-rays. The scans were clean and were clean in the films that came in the following month. On the fifth visit, he sat my parents and me down and said, “Hayleigh has all the symptoms of a broken wrist, but her bones are fine. My diagnosis is: Small Child’s Disease. She just needs more attention at home, and she will stop faking this.” Anyone who knows my family, knows that they were not lacking in giving me attention. When my pediatrician heard this, she sent me to Arkansas Children’s Hospital in Little Rock for an MRI. When that scan showed to be normal, Dr. Wenger sent me back for another MRI with contrast. After 5 IV sticks shared between both arms, a hairline, scaphoid fracture was finally discovered. I was put into a long arm cast with a thumb spica for three months, then immediately sent to physical therapy after the cast was removed. At CME Inc. in Paragould, my assigned physical therapist left me alone with two trainees. They put my arm in a bucket of ice water, transferred it to scalding water, then hooked me up to a TENS unit where they maxed out the machine. I lost complete control of the muscles in my arm because the electric current was so strong. The pain was excruciating and automatically brought tears. I never returned, even though I had weeks of therapy left.
After:
For the next three years, I struggled with intense pain that was shown in many forms as well as swelling, skin discoloration, tremors, and no answers for why this was still happening. The bone was healed, but I seemed to be getting worse. Countless doctors told me there wasn’t a diagnosis for my problem until a neurologist and a team at ACH’s pain clinic decided I had Complex Regional Pain Syndrome(CRPS).
In 2017, my symptoms got worse and started crawling up my arm, mirroring to the right, and spreading to both legs. My symptom list was also growing, and brain fog set in. The only thing that gave me an ounce of relief was ice packs and cool air, then cold air began to slice through to the bone. I missed an average of two days a week of school and gravely suffered academic consequences. I had prepared to be an honor grad but was devastated to see my 3.7 GPA plummet to a 2.27 GPA. College was supposed to be my top priority. All of my friends were getting scholarships and planning out the rest of their lives while I was struggling to get out of bed in the morning.. every morning.
I was surprised to make it to my senior year. The staff at school, my parents, and I worked out a schedule and assignments that were easier for me to handle. It was a battle, but I graduated in May of 2019 with plans to travel to California, not for a school, but for a “promising” treatment.
Calmar treatment, otherwise known as Scrambler Therapy, is a form of noninvasive electro therapy that disrupts and reroutes pain signals. You sit through an hour long treatment a day for ten days, you get 3-6 months of 85-100% relief, then you return for 1-2 treatments when your pain begins to increase. I received 12 treatments and had 1 week of 70% relief and 2 weeks of 50% relief. So, we kept looking for other options. I had never been prescribed narcotics, hated the idea of ketamine (horse tranquilizer), and surgery for a spinal cord stimulator was the last resort. Out of nowhere, my mom was told about The Spero Clinic (Integrated Health and Wellness), and it happens to just be 5 hours away from home!
Now:
The Spero Clinic is run by Dr. Katinka Van der Merwe. She traveled around the world studying CRPS; formed a practice with her sister, Dr Hannelie Van der Merwe, and her father, Dr Lucas Van der Merwe; and built a house of hope and healing filled with amazing staff that are compassionate, patient, and understanding. They design a schedule for their patients full of therapies and noninvasive treatments that collectively relieve chronic pain of most forms if not all.
For a typical case, $40,000 for 12 weeks of treatment at the clinic are all you need for remission. I, however, turn out to not be a typical case. My first 3 weeks were as expected: small changes, and slight decreases in pain and symptoms. Then I seemed to hit a brick wall. I wasn’t progressing and as the weeks continue to go by, I am slowly getting worse. A blood panel was ordered in my 7th week and Dr. Hannelie found a viral and bacterial infection. Infections fight against treatment, so I am now on an infection protocol. I have been in treatment for over 10 weeks and am still struggling with underlying issues that are preventing progress.
The bills are racking up because none of my treatment is covered by insurance. My family has already spent $40,000 at the clinic, rent is $700 a month, travel expenses are (at minimum) $100 a week, and funds are quickly draining. As of right now, I am guaranteed to be in treatments for another 8 weeks, charged rent twice, and spend $1,000 in travel.
Our Goal:
Our goal is to raise $30,000 to cover the cost of the upcoming treatment, travel, and rent expenses.
Any donation at all will:
help me to physically be able to go to college and work
get me back to painting, sculpting, and singing to my heart’s desire
(Most importantly) aid in my recovery and get me to the life I am supposed to live- A life full of hope, good health, and growth
Complex Regional Pain Syndrome(CRPS), formerly known as Reflex Sympathetic Dystrophy and nicknamed The Suicide Disease, is a nerve disorder that is nearly impossible to define because every person that has it has a different experience, but everyone has intense pain and a long list of mind boggling symptoms. For me, it means I can’t write more than a sentence without sharp, burning pain in my hand and arm. The sun, combined with high temperatures, gives me itching, burning, rashes on the exposed skin. Water, especially when cold, rewards red welts that turn into swollen, feverish limbs that throb. My senses are heightened and altered: “too much” light gives me a significant headache, I can feel the stitches in my clothes and can no longer wear certain things like long sleeve shirts and bras with straps, sound isn’t just heard but felt as well, etc. I’m constantly dizzy and am no stranger to vertigo spells. And list continues..
CRPS is the highest rated condition on the McGill Pain Scale (43/50).
What happened:
August 2012- One day at school, I was pushed down and caught myself on a concrete block. Within the next week, my parents took me to Dr. Richardson at AMMC Paragould Arkansas. My left hand and wrist were swollen, purple, cold, and clammy, so the orthopedic surgeon decided to do a series of x-rays. The scans were clean and were clean in the films that came in the following month. On the fifth visit, he sat my parents and me down and said, “Hayleigh has all the symptoms of a broken wrist, but her bones are fine. My diagnosis is: Small Child’s Disease. She just needs more attention at home, and she will stop faking this.” Anyone who knows my family, knows that they were not lacking in giving me attention. When my pediatrician heard this, she sent me to Arkansas Children’s Hospital in Little Rock for an MRI. When that scan showed to be normal, Dr. Wenger sent me back for another MRI with contrast. After 5 IV sticks shared between both arms, a hairline, scaphoid fracture was finally discovered. I was put into a long arm cast with a thumb spica for three months, then immediately sent to physical therapy after the cast was removed. At CME Inc. in Paragould, my assigned physical therapist left me alone with two trainees. They put my arm in a bucket of ice water, transferred it to scalding water, then hooked me up to a TENS unit where they maxed out the machine. I lost complete control of the muscles in my arm because the electric current was so strong. The pain was excruciating and automatically brought tears. I never returned, even though I had weeks of therapy left.
After:
For the next three years, I struggled with intense pain that was shown in many forms as well as swelling, skin discoloration, tremors, and no answers for why this was still happening. The bone was healed, but I seemed to be getting worse. Countless doctors told me there wasn’t a diagnosis for my problem until a neurologist and a team at ACH’s pain clinic decided I had Complex Regional Pain Syndrome(CRPS).
In 2017, my symptoms got worse and started crawling up my arm, mirroring to the right, and spreading to both legs. My symptom list was also growing, and brain fog set in. The only thing that gave me an ounce of relief was ice packs and cool air, then cold air began to slice through to the bone. I missed an average of two days a week of school and gravely suffered academic consequences. I had prepared to be an honor grad but was devastated to see my 3.7 GPA plummet to a 2.27 GPA. College was supposed to be my top priority. All of my friends were getting scholarships and planning out the rest of their lives while I was struggling to get out of bed in the morning.. every morning.
I was surprised to make it to my senior year. The staff at school, my parents, and I worked out a schedule and assignments that were easier for me to handle. It was a battle, but I graduated in May of 2019 with plans to travel to California, not for a school, but for a “promising” treatment.
Calmar treatment, otherwise known as Scrambler Therapy, is a form of noninvasive electro therapy that disrupts and reroutes pain signals. You sit through an hour long treatment a day for ten days, you get 3-6 months of 85-100% relief, then you return for 1-2 treatments when your pain begins to increase. I received 12 treatments and had 1 week of 70% relief and 2 weeks of 50% relief. So, we kept looking for other options. I had never been prescribed narcotics, hated the idea of ketamine (horse tranquilizer), and surgery for a spinal cord stimulator was the last resort. Out of nowhere, my mom was told about The Spero Clinic (Integrated Health and Wellness), and it happens to just be 5 hours away from home!
Now:
The Spero Clinic is run by Dr. Katinka Van der Merwe. She traveled around the world studying CRPS; formed a practice with her sister, Dr Hannelie Van der Merwe, and her father, Dr Lucas Van der Merwe; and built a house of hope and healing filled with amazing staff that are compassionate, patient, and understanding. They design a schedule for their patients full of therapies and noninvasive treatments that collectively relieve chronic pain of most forms if not all.
For a typical case, $40,000 for 12 weeks of treatment at the clinic are all you need for remission. I, however, turn out to not be a typical case. My first 3 weeks were as expected: small changes, and slight decreases in pain and symptoms. Then I seemed to hit a brick wall. I wasn’t progressing and as the weeks continue to go by, I am slowly getting worse. A blood panel was ordered in my 7th week and Dr. Hannelie found a viral and bacterial infection. Infections fight against treatment, so I am now on an infection protocol. I have been in treatment for over 10 weeks and am still struggling with underlying issues that are preventing progress.
The bills are racking up because none of my treatment is covered by insurance. My family has already spent $40,000 at the clinic, rent is $700 a month, travel expenses are (at minimum) $100 a week, and funds are quickly draining. As of right now, I am guaranteed to be in treatments for another 8 weeks, charged rent twice, and spend $1,000 in travel.
Our Goal:
Our goal is to raise $30,000 to cover the cost of the upcoming treatment, travel, and rent expenses.
Any donation at all will:
help me to physically be able to go to college and work
get me back to painting, sculpting, and singing to my heart’s desire
(Most importantly) aid in my recovery and get me to the life I am supposed to live- A life full of hope, good health, and growth
Organizer
Hayleigh Guthrie
Organizer
Corning, AR
