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My Story

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Hi
My name is Samantha.  I was a perfectly healthy toddler, but then
at the age of 2 years, my whole life changed and so did my family's life!  I woke up from a nap and couldn't stand straight--I couldn't
walk.  I was scared!  My mom and grandma rushed me to the hospital emergency room.  They told my mom that I had a middle ear infection--everything will be okay!  Of course, that was not the real story!  Within a week, I couldn't even sit up on my own.  I couldn't hold my head up--my whole body shook all over--my eyes darted in every direction.  What was happening?
My mom and grandma took me to all kinds of doctors--I had brain scans, blood tests, and every other test that you can imagine.  Then I was taken by ambulance to Doernbecher Children's Hospital and a neurologist was called in to see me.  He looked at me and shook his head--he couldn't believe what he was seeing--I had a very rare syndrome--Opsoclonus Myoclonus.  It affects only 1 in 10,000,000 around the world and only about 200 cases are reported worldwide!  Well, the next year things were really bad.  I received steroid injections twice a day along with all kinds of other medicines to help my body calm down.  I was having seizures every couple hours--we couldn't have lights on at certain times--the TV really bothered me--and please keep me out of crowds.  My body was so over-stimulated!  I was really a wreck and I had to use a wheelchair to get around.  I had to learn to walk all over again
and it took me almost 2 years to be able to roll over on my own.
Could I talk?  Oh, yes, I could talk, but the only people that could understand me was my family.  Of course, I had many rage attacks--my brain was being attacked and the steroids were not much fun either.  My Uncle Jeff went on the internet and found me a doctor in Springfield, Illinois.  He was a specialist for Opsoclonus Myoclonus.  I live in Oregon so Miracle Flights helped fly us to see the doctor.  He really helped me by
using spinal taps and blood work to see what was wrong and how to help me.  I then had to have IVIG treatments for the next 4 years to help my immune system.   Then to complicate all of this, I was diagnosed with neuroblastoma cancer just before I turned 4 years old.  I had to have the tumor and my left adrenal gland removed.  I also had to have chemotherapy, more
steroids, and lots more medicines.  In the meantime, I have had to learn how to communicate clearly with speech therapy.  I have had lots of physical therapy and occupational therapy.  I am getting better, but there is always the chance that I may wake up again one day and not be able to walk again.  Because this syndrome--Opsoclonus Myoclonus--is so rare, the doctor really cannot say what the long term prognosis is.  Of course, the average age that it all starts is age 2 and we really won't know the total damage to my brain until I get older.  I do know that math is hard for me and I still don't like to be around crowds.  I have already experienced precocious puberty and that sure is not fun, especially when that started at 4 years old and I am now just 8 years old.  I have lots of anxiety issues and sometimes it is very hard for me to control my body and mind.  I
have times still when I have problems with balance since I have
ataxia and my stomach turns upside down.  I do love life and
wonder what will happen in the future, but I really just have to take it one day at a time.  I missed my toddler years and it seemed like I have spent so much time in the hospital hooked to IV poles, having surgeries, having treatments to make me better.  Then I would go home and be sick.  Many days I wanted to just cry, but I know God has put me here on Earth for something special.  So I continue my journey and pray that someday  I will be able to look back at this and not actually have to live it day after day.  However, I am thankful that I
have been able to make it through all this so far.  I thank God
and I thank everyone who has supported me with prayers.


I know you all must want to know more about my syndrome-Opsoclonus Myoclonus-- since it only affects 1 in 10,000,000!  My doctor in Illinois, Dr. Pranzatelli, has a website and it gives a lot of information.  He also has a couple videos on there, too,about kids like me.  So please take time to look at them and you will see some of the same things I have had to go through and how this syndrome affected my whole body!
His website is www.omsusa.org      so check it out and you will learn lots.  My family and I continue to learn more and more each and every day.  Thank you for visiting.  Samantha