My goal To raise money for research about Amplified Pain to support the other kids with this syndrome,to support the program that helped me
Hi my name is Hailey Brunson I'm 14 and I manage my RND (Reflex* Neurovascular Dystopy)/AMPS(Amplified Pain). I was first diagnosed with RND/AMPS after I was in the hospital for around a week when I was 12. Now, this syndrome didn't just come out of the blue; my parents and I had always thought something wasn't quite right. We thought this because I "broke" and swelled an abnormal amount with injuries since I was 9. Most people know me as a fun loving, athletic girl, others as the girl "who was always broken." But, because I "ball hard" in my sports, I put myself in situations where a normal person would get banged and bruised and would be able to walk it off; I couldn't.
RND/AMPS is a rare neurological syndrome where there is severe amplification of pain. When I played hard in sports and got banged and bruised, I swelled and my limbs got ice cold. That lead to xrays, which lead to me being told I had broken bones,that lead to casts, (growth plates are such a nuisance). Every time I recovered, after longer than average, I went back to playing hard and the cycle continued. My total count of "broken bones" is 17.
When I was 12 I went to the hospital with a spasming arm and I was put on an extraordinary amount of muscle relaxers and pain killers. Dr. Huang, the pain anesthesiologist, told my parents that I had a rare pain syndrome. No treatments or medications we tried worked. Still, we were happy to have a name for my condition, RND. At that point I had been seen by at least 10 doctors, all while being on enough pain killers to "put a child to sleep for hours, possbily days." I only slept for an hour, maybe 3 a day, while my whole body was in convulsions. I can't tell you much about that week, because I was (legally mind you), high. No one could touch me without it causing me immense pain. It was decided that I should go to see Dr. Sherry at Children's Hospital of Philadelphia.
The first thing Dr Sherry did when he walked into the room was move my arm, the one nobody would touch. (I was still having body convulsions). He acted as if nothing was wrong, all while telling me riddles to keep me distracted from my pain. The spasming stopped and then we had a calm-ish conversation with my parents where he explained RND to us. His program was where I needed to be.
*Flash forward 8 months to where I began his program.*
My program was intense physical therapy for 5 weeks. My day was 6 hours of OT/PT and art/music/talk therapy. Regardless of my pain level, I completed activities I normally would be able to do with ease; I struggled more than you could imagine. To overcome RND you "max out" of pain by pushing past your limits.
The program has 7-9 kids with RND at a time; some kids go through faster than others. For my 5 weeks I got to be around kids my age who understood what it felt like to be different in a terrible way, who have lived through pain the way I have, and who would see me crying and not ask "what's wrong", but would just hug me until I was fine, then playfully hit me in the areas where I had the most pain (because it helped; not to be rude). The kids I met there I will truly always care about. I have seen these people, my new best friends, at their lowest, and they have seen my at mine, but we have also seen each other beat our RND and be happy and close to pain free.
The kids weren't my only support. Dr Sherry, Dr Bernal and all 14 of their staff are the reason I am as healthy as I am today. They cared about me physically and mentally, became my friend (in a adult to child relationship), helped me keep going when I thought I could go no further, made me laugh, pushed me past my limits, made me smile, and helped me become Me again. They all made my journey as happy, caring and helpful as possible. Without them and the friends I made I would not be who I am today.
Today I am in significantly less pain, happier, know how to deal with/get rid of my pain, know what causes my pain, live the life I want to live, not controlled by pain, allowing myself to be optimistic.
This AMPS program has ridded me of most of my chronic pain that I have been in since I was 9. I can now dream of a future without pain. This program changed my life and that is why I hope you will donate. By doing so, you will help other kids be free from their pain, and be allowed to dream again, too. It wasn't easy or fun until my final days, but I stuck with it and my doctors stood by me. I want other kids to be as happy as I am now. This fundraiser isn't about me, it's about the kids like me who are in pain and can't receive help or are diagnosed with the wrong thing. My family and I are running in the 5K to help support the AMPS program at CHOP. We hope you will help support this cause.
-Hailey Brunson, RND Fighter
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PO BOX 7762
WILMINGTON, DE 19803
The Childhood RND Educational Foundation, Inc, a 501(c)(3) non-profit organization dedicated to educating health professionals and families.
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