Zoe's Heroes: A CRPS Collaborative

On February 29th, 2016, I woke up a typical, athletic 11 year old girl.  That is, until 1:32 PM when I was walking with my friend and a 40 pound paver fell onto my foot.

You know that feeling when you don't know what to think - when you look around you and just see a blur of people - you feel hot all throughout your body and a voice inside your head tells you that you’re hurt and you need to do something about it.   Well, that happened - and my friends took me to the nurse.

I could not put my foot down on the ground and no one could touch it.  I was in a lot of pain.  My dad got me crutches.  Although I used the crutches, it still hurt.  I went to school the next day.  I never knew how it felt to be looked at in the worst way just because something was a little different about you.  That first day was rough.  After X-rays and MRIs and no diagnosis it got even tougher.  I could not walk, the pain was awful, and every time people asked what happened, it hurt to tell the story.

Eventually it was spring break but I still couldn't move my foot.  Then my birthday came but still I was not walking and still I was in pain.  The Monday after my birthday was terrible. I woke up and could not get out of bed.  I still could not walk.  That day my dad got me a knee walker.

Another few weeks went by. It was almost the end of April and if you closed the door too fast to my room - which creates wind - I would cry from the pain in my foot. I was going to physical therapy where I was making no progress. Finally, the physical therapist suggested we might look into something called Complex Reagional Pain Syndrome.  And he recommended that we find a pain specialist.    

That doctor asked me a lot of questions,  then he left the room with my dad.  You remember that feeling that you get when you know that something is seriously wrong. Yeah, I had that feeling again.  You can tell from the way the doctors talk and the way they look at you.   After waiting for what felt like 3 years my dad and the doctor came back in all sad and sympathetic.  That's when you know something is really, really wrong.  It was then that the doctor diagnosed me with CRPS.   

They scared me.  A lot.  I felt like I was never going to be normal again, never going run again or play soccer and other sports. I didn't want to lose that. We went to a few other doctors in New York City,  just to be sure. They were sure. I had CRPS.

Please click on the video link to hear my full story.  Through my journey I have learned a lot.  Especially that kids in pain need to be diagnosed fast, they need to stay functional and engaged in their everyday life and that there are not enough nurses and pediatricians that are knowledgable about CRPS.  With your help, it is my goal to raise money and awareness for Pediatric CRPS.

No amount is too small.  I was told that your donations are tax deductible to the extent allowed by law.

Thank you for your support!

Donations (0)

  • Anonymous 
    • $50 
    • 14 mos
  • Laura Bortstein 
    • $100 
    • 15 mos
  • The Mandel Family 
    • $50 
    • 15 mos
  • Ella Mandel 
    • $50 
    • 15 mos
  • Scott Krase 
    • $5 
    • 16 mos

Organizer 

Lauren Pollack Gellert 
Organizer
Chappaqua, NY
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