Kerri's Hope for Healing
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THE GOOD NEWS: Kerri has been accepted as a patient at the Carrick Brain Center in Irving, TX. Kerri's motto is "I Refuse to Sink!" Carrick's motto is "Help. Hope. Possibilities." As the leading center for advanced brain repair and rehabilitation, Carrick Brain Center helps improve the lives of patients suffering from brain injuries or degenerative conditions that affect the brain and central nervous system.
THE BAD NEWS: Treatment at Carrick costs $1,500 per day and is not covered by insurance. Plane flights to and from Texas are $1,100 and a hotel room costs $150/night. Kerri and her husband, Matt, will be traveling to Carrick on December 9, and the earliest date she will be discharged is December 17. The length of her stay will be dependent on her progress. This leaves our family with very little time to come up with a minimum of $15,000 to fund just the FIRST week of the treatment she needs to regain her life.
THE UGLY NEWS: Kerri's complex and severe medical conditions already include the following, and her specialists believe there may be other rare, complicating factors that have not yet been diagnosed:
1. Dysautonomia
2. Brainstem and cerebellum injury
3. Postural Orthostatic Tachycardia Syndrome
4. Neurocardiogenic syncope
5. Vasovagal syncope
6. Cervical dystonia
7. Benign paroxysmal positional vertigo
8. Mycoplasma pneumoniae
9. Epstein Barr virus in brain
10. HSV Type 1
11. Chronic fatigue syndrome
12. Narcolepsy
13. Ehlers Danlos Syndrome
14. Joint hypermobility dysfunction
15. Gastroparesis
16. Irritable bowel syndrome
17. Blood platelet aggregation disorder
18. Migraines
19. Endometriosis
20. Polycystic ovarian syndrome
*******************KERRI'S STORY*******************
“Hope is like light…even the tiniest bit guides us through the darkness.”
When I was 18 months old, I tripped over my Mom’s foot. Instead of getting up and brushing it off like any other baby would have - I stopped breathing, turned blue and gave my Mom the biggest scare of her life. Little did she know, that was only the beginning. Throughout my childhood I passed out unexpectedly in every setting possible. Each time, all of my energy and life slipped right out of me as I lay there like a ragdoll wondering “what is wrong with me?” The pediatric specialists diagnosed me with reflex anoxic breath holding spells – a rare disorder of the nervous system which occurs in only 4.6% out of 4,980 people. This causes the blood flow and oxygen to be taken away from my brain and heart; causing me to become unconscious. My pediatric neurologist told us that 85% of children grow out of this but we came to find out I would be one of the 15% to struggle for the rest of my life. We later found out I had vasovagal syncope. Growing up, I got concussions from passing out unexpectedly but after a few weeks I was back to my normal happy go lucky self. I decided to pursue a degree and build a career in physical therapy when I graduated high school. My hope was when I would meet a patient who felt at their worst, because of my knowledge, I would be able to help them get back to where they wanted and needed to be in life. I thought to myself, even though there is no cure for what is wrong with me, I still have a passion to make someone else’s life better.
I graduated, passed my state boards and landed my dream job in a rehabilitation hospital. Four weeks before I started my job, my life changed forever. April 2011- a time I wish I could take back in an instant- I stopped breathing, went unconscious, hit my head and neck then slid down a brick wall. When I finally woke up I couldn’t move. It felt like a ton of bricks were weighing me down and my arms and legs were cement. I was rushed to the emergency room where more tests were done. All I wanted was to go home and be normal. I finally got discharged after my body started to revive itself. I pushed myself to start my new career; I still had this deep passion inside of me to help others. I thought to myself…“I want to inspire people. I want someone to look at me and say because of you, I didn’t give up.” I was doing my best to get my patients back to where they needed to be while at the same time I was fighting like hell to survive. The day I hit my head my body changed forever. Because of where I hit my head and neck, I suffered a brainstem and cerebellum injury; impairing my brainstem’s ability to function properly. As a result I also developed cervical dystonia with extreme neck, head and eye pain and tightness. My heart rate sky rocketed, my blood pressure dropped, my balance was off, my vision was messed up and the life was drained out of me. One day in November 2011, I forced myself to get up and go to work. All of a sudden it felt hard to move my arms and legs my body and the vision in my right eye went black. I was taken to the hospital where I would stay in the neurological ICU for 3 weeks. My symptoms became worse than they had ever been. Every time I passed out, when I would wake up I would be temporarily paralyzed from my neck down. Every time they would sit me up or attempt to stand me up, I would pass out. I went from being completely functional to not even being able to stand up by myself. At this time I was diagnosed with two forms of Dysautonomia called postural orthostatic tachycardia syndrome and neurocardiogenic syncope. I was also diagnosed with chronic fatigue syndrome and narcolepsy. I was sent home in a wheelchair. I fought like hell to gain my strength back and used my knowledge of physical therapy to get my endurance back as much as I could. I was beyond sick of being a patient but I sucked it up and continued to go see specialists, go to physical therapy and get more testing done. I was sent home on 11 medications. Two of which made me gain 30 pounds. I watched as my life was falling apart when I felt like it was just supposed to be starting. I pushed myself to get back to work and I struggled day in and day out.
After three long years of fighting, in February 2014, I made the hardest decision in my life and gave up my job so I could focus on getting myself back to the best I could be. I had to be admitted back in the hospital in April 2014 and once again I watched my endurance and progress dwindle. No matter how many times I break down, there is always a little piece of me that says “No, you’re not done yet –get back up.” I thought to myself “the moment you feel like giving up…remember all the reasons you held on for so long.” I had slowly worked my way back off all medications except for one (my medication to control my heart rate.) I dedicated myself to a ketogenic low fodmap diet and exercising as much as I could tolerate. With a lot of hard work & determination I lost 45 pounds but all my symptoms remained. I started going to acupuncture twice a week to help treat my symptoms which I am so grateful my Mom suggested it. My acupuncturist is amazing and she helps change my life for the better. I also went to a neuro-optometrist once a month. Every night I did light box therapy to work on my nervous system and vision.
I started to decline more at the end of August 2014. In the beginning of September 2014, I found another medical professional to help my conditions. I started seeing a chiropractic neurologist and continue to see him three times a week. He is dedicated to helping me but he has told me that I am one of his most complex and severe patients and require more aggressive treatment. This December, my husband and I will be making the trip down to a place called The Carrick Brain Center in Irving, Texas where he referred me to. There I will receive the neurological testing and treatment I desperately need. His effort and dedication to helping me heal is changing my life for the better. At the end of September, I was also diagnosed with a connective tissue disorder, called Ehlers Danlos Syndrome, that causes me a lot of pain and joint subluxations. At the beginning of October 2014 I started having more syncopal episodes & my coordination/strength/ sensation especially in my core and legs decreased, my bladder became affected by my nervous system, my stomach began to have more difficulty emptying because the nerves do not allow my stomach muscles to contract and digest. This causes severe nausea and pain. Every time I stand I go into pre-syncope with dizziness and blacking out, my heart races and my blood pressure drops, my legs have a difficult time holding me & I require a wheelchair again. I try my best to hold on to the things in life I enjoy but as the time passes everything keeps getting more difficult. One thing I really enjoy is the trail with my husband and pup. It feels great when I am able to tolerate going outside but I can’t help but think as people pass me walking/running while my husband is pushing me in my chair...that used to be me. I can’t help but think...I've already fought my way out of this before. November 13, 2014 I got admitted to the hospital again.
My body continues to fight against me but no matter what I am determined to roll with the punches. I am determined to find peace with my situation & keep fighting. I am determined to not let my medical conditions take away my hope & positivity for life! Hope is being able to see that there is light, despite all of the darkness. Someday I’ll be able to look back on all of this as a memory but right now I’m just trying to keep my strength up and make it to tomorrow. I want everyone to know that you have to fight through some bad days to earn the best days of your life. You can’t stop the waves but you can learn to surf; and I REFUSE TO SINK. Never lose hope, keep your faith, run when you can, walk when you have to, crawl if you must – just NEVER GIVE UP!
Thank you with all my heart to everyone who has loved & supported me throughout this journey. Even on my weakest days, I get a little bit stronger…one day at a time.
“Strong is FIGHTING. It’s hard, it’s painful and it’s every day.”
“Our greatest glory is not in never falling, but in rising every time we fall.”
"I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day, and I BELIEVE in miracles."
FOR MORE INFORMATION:
http://carrickbraincenters.com/
http://www.dysautonomiainternational.org/
THE BAD NEWS: Treatment at Carrick costs $1,500 per day and is not covered by insurance. Plane flights to and from Texas are $1,100 and a hotel room costs $150/night. Kerri and her husband, Matt, will be traveling to Carrick on December 9, and the earliest date she will be discharged is December 17. The length of her stay will be dependent on her progress. This leaves our family with very little time to come up with a minimum of $15,000 to fund just the FIRST week of the treatment she needs to regain her life.
THE UGLY NEWS: Kerri's complex and severe medical conditions already include the following, and her specialists believe there may be other rare, complicating factors that have not yet been diagnosed:
1. Dysautonomia
2. Brainstem and cerebellum injury
3. Postural Orthostatic Tachycardia Syndrome
4. Neurocardiogenic syncope
5. Vasovagal syncope
6. Cervical dystonia
7. Benign paroxysmal positional vertigo
8. Mycoplasma pneumoniae
9. Epstein Barr virus in brain
10. HSV Type 1
11. Chronic fatigue syndrome
12. Narcolepsy
13. Ehlers Danlos Syndrome
14. Joint hypermobility dysfunction
15. Gastroparesis
16. Irritable bowel syndrome
17. Blood platelet aggregation disorder
18. Migraines
19. Endometriosis
20. Polycystic ovarian syndrome
*******************KERRI'S STORY*******************
“Hope is like light…even the tiniest bit guides us through the darkness.”
When I was 18 months old, I tripped over my Mom’s foot. Instead of getting up and brushing it off like any other baby would have - I stopped breathing, turned blue and gave my Mom the biggest scare of her life. Little did she know, that was only the beginning. Throughout my childhood I passed out unexpectedly in every setting possible. Each time, all of my energy and life slipped right out of me as I lay there like a ragdoll wondering “what is wrong with me?” The pediatric specialists diagnosed me with reflex anoxic breath holding spells – a rare disorder of the nervous system which occurs in only 4.6% out of 4,980 people. This causes the blood flow and oxygen to be taken away from my brain and heart; causing me to become unconscious. My pediatric neurologist told us that 85% of children grow out of this but we came to find out I would be one of the 15% to struggle for the rest of my life. We later found out I had vasovagal syncope. Growing up, I got concussions from passing out unexpectedly but after a few weeks I was back to my normal happy go lucky self. I decided to pursue a degree and build a career in physical therapy when I graduated high school. My hope was when I would meet a patient who felt at their worst, because of my knowledge, I would be able to help them get back to where they wanted and needed to be in life. I thought to myself, even though there is no cure for what is wrong with me, I still have a passion to make someone else’s life better.
I graduated, passed my state boards and landed my dream job in a rehabilitation hospital. Four weeks before I started my job, my life changed forever. April 2011- a time I wish I could take back in an instant- I stopped breathing, went unconscious, hit my head and neck then slid down a brick wall. When I finally woke up I couldn’t move. It felt like a ton of bricks were weighing me down and my arms and legs were cement. I was rushed to the emergency room where more tests were done. All I wanted was to go home and be normal. I finally got discharged after my body started to revive itself. I pushed myself to start my new career; I still had this deep passion inside of me to help others. I thought to myself…“I want to inspire people. I want someone to look at me and say because of you, I didn’t give up.” I was doing my best to get my patients back to where they needed to be while at the same time I was fighting like hell to survive. The day I hit my head my body changed forever. Because of where I hit my head and neck, I suffered a brainstem and cerebellum injury; impairing my brainstem’s ability to function properly. As a result I also developed cervical dystonia with extreme neck, head and eye pain and tightness. My heart rate sky rocketed, my blood pressure dropped, my balance was off, my vision was messed up and the life was drained out of me. One day in November 2011, I forced myself to get up and go to work. All of a sudden it felt hard to move my arms and legs my body and the vision in my right eye went black. I was taken to the hospital where I would stay in the neurological ICU for 3 weeks. My symptoms became worse than they had ever been. Every time I passed out, when I would wake up I would be temporarily paralyzed from my neck down. Every time they would sit me up or attempt to stand me up, I would pass out. I went from being completely functional to not even being able to stand up by myself. At this time I was diagnosed with two forms of Dysautonomia called postural orthostatic tachycardia syndrome and neurocardiogenic syncope. I was also diagnosed with chronic fatigue syndrome and narcolepsy. I was sent home in a wheelchair. I fought like hell to gain my strength back and used my knowledge of physical therapy to get my endurance back as much as I could. I was beyond sick of being a patient but I sucked it up and continued to go see specialists, go to physical therapy and get more testing done. I was sent home on 11 medications. Two of which made me gain 30 pounds. I watched as my life was falling apart when I felt like it was just supposed to be starting. I pushed myself to get back to work and I struggled day in and day out.
After three long years of fighting, in February 2014, I made the hardest decision in my life and gave up my job so I could focus on getting myself back to the best I could be. I had to be admitted back in the hospital in April 2014 and once again I watched my endurance and progress dwindle. No matter how many times I break down, there is always a little piece of me that says “No, you’re not done yet –get back up.” I thought to myself “the moment you feel like giving up…remember all the reasons you held on for so long.” I had slowly worked my way back off all medications except for one (my medication to control my heart rate.) I dedicated myself to a ketogenic low fodmap diet and exercising as much as I could tolerate. With a lot of hard work & determination I lost 45 pounds but all my symptoms remained. I started going to acupuncture twice a week to help treat my symptoms which I am so grateful my Mom suggested it. My acupuncturist is amazing and she helps change my life for the better. I also went to a neuro-optometrist once a month. Every night I did light box therapy to work on my nervous system and vision.
I started to decline more at the end of August 2014. In the beginning of September 2014, I found another medical professional to help my conditions. I started seeing a chiropractic neurologist and continue to see him three times a week. He is dedicated to helping me but he has told me that I am one of his most complex and severe patients and require more aggressive treatment. This December, my husband and I will be making the trip down to a place called The Carrick Brain Center in Irving, Texas where he referred me to. There I will receive the neurological testing and treatment I desperately need. His effort and dedication to helping me heal is changing my life for the better. At the end of September, I was also diagnosed with a connective tissue disorder, called Ehlers Danlos Syndrome, that causes me a lot of pain and joint subluxations. At the beginning of October 2014 I started having more syncopal episodes & my coordination/strength/ sensation especially in my core and legs decreased, my bladder became affected by my nervous system, my stomach began to have more difficulty emptying because the nerves do not allow my stomach muscles to contract and digest. This causes severe nausea and pain. Every time I stand I go into pre-syncope with dizziness and blacking out, my heart races and my blood pressure drops, my legs have a difficult time holding me & I require a wheelchair again. I try my best to hold on to the things in life I enjoy but as the time passes everything keeps getting more difficult. One thing I really enjoy is the trail with my husband and pup. It feels great when I am able to tolerate going outside but I can’t help but think as people pass me walking/running while my husband is pushing me in my chair...that used to be me. I can’t help but think...I've already fought my way out of this before. November 13, 2014 I got admitted to the hospital again.
My body continues to fight against me but no matter what I am determined to roll with the punches. I am determined to find peace with my situation & keep fighting. I am determined to not let my medical conditions take away my hope & positivity for life! Hope is being able to see that there is light, despite all of the darkness. Someday I’ll be able to look back on all of this as a memory but right now I’m just trying to keep my strength up and make it to tomorrow. I want everyone to know that you have to fight through some bad days to earn the best days of your life. You can’t stop the waves but you can learn to surf; and I REFUSE TO SINK. Never lose hope, keep your faith, run when you can, walk when you have to, crawl if you must – just NEVER GIVE UP!
Thank you with all my heart to everyone who has loved & supported me throughout this journey. Even on my weakest days, I get a little bit stronger…one day at a time.
“Strong is FIGHTING. It’s hard, it’s painful and it’s every day.”
“Our greatest glory is not in never falling, but in rising every time we fall.”
"I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day, and I BELIEVE in miracles."
FOR MORE INFORMATION:
http://carrickbraincenters.com/
http://www.dysautonomiainternational.org/
Organizer
Rebecca White
Organizer
Madison, AL