Kaley-CRPS-Trip to RI for Treatment

My 15 year old granddaughter has CRPS and was diagnosed three years ago.  This is a chronic/acute nerve pain condition that seems to affect young girls more than others.  It can start with a simple injury such as stubbing a toe or from an infection such as an UTI.  The history of this condition is that it was usually associated with a traumatic injury, but in recent years, it seems to be more prevalent.  My daughter and I have researched as much as we can utilizing the Internet and my granddaughter has been an inpatient 3 times at the Cleveland Clinic.  Their "treatment" tends to be a form of "brain washing" they refer to as brain retraining.  Primarily they try to teach the child how to manage the pain.  My granddaughter has been on Neurotin, Lyrica, and now, Cymbalta.  None of these have been effective to take away the pain.  She has tried several different treatments beside the brain retraining from chiropractic to microfrequency stimulation and thus far has not had any real relief.  There is a doctor in Rhode Island who has been quite successful with a new treatment that we want Kaley to have, but it is not covered by insurance.  Thus, in addition to the $15,000 for the eight weeks of treatment, one of the family will have to be with her for the entire time.  What this means is a hotel room cost for 8 weeks, airplane flights back and forth for the different members who will be staying with her throughout the eight weeks, food, etc.  We anticipate a total outlay of approximately $25,000.  We need help with this cost as this is beyond our means.  PLEASE help in whatever amount you can as this child deserves to be pain free.  Her spirit and attitude is absolutely inspiring, but after three years of constant, acute pain throughout her entire body affecting everything from eating to breathing to moving, she is beginning to give up hope.  PLEASE give her hope again!

Donations

  • Anonymous 
    • $10 
    • 61 mos
  • Christine Willman 
    • $50 
    • 61 mos
  • Anonymous 
    • $25 
    • 61 mos
  • Anonymous 
    • $10 
    • 61 mos
  • Dala Stahley 
    • $500 
    • 62 mos
See all

Organizer and beneficiary

Karen Best 
Organizer
Indianapolis, IN
Amy Larkin 
Beneficiary
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