You May Have a Child with a Rare Disease... WAGR Wednesday

Celebrating Evie's Surviving Cancer

• If you think every occupation ends in "ologist," (chefologist, cashierologist, mechanicologist...) you may have a child with a rare disease.
• If you've driven through a blizzard to get to a specialist appointment, you may have child with a rare disease.
• If a comment from a stranger didn't bother you yesterday, but today that same comment made you want to punch a wall, you may have a child with a rare disease.
• If you've ever been asked what your child's life expectancy is, you may have a child with a rare disease.
• If you've ever been reimbursed for travel to a place like the Mayo Clinic, or the National Institutes of Health, you may have a child with a rare disease.

  

  Sleep Study at the NIH

• If you've ever had to "fire" a specialist who cared for your child, you may have a child with a rare disease.
• If you have files labeled:  IEPs, Medical Bills, Insurance, SSI, Eyes, Kidneys, Cancer...or other similar labels, you may have a child with a rare disease.
• If you've ever felt like you're in a three ring circus when you take your child to the ER, you may have a child with a rare disease.
• If you've ever felt so close to an on-line support group that you consider many of them family, you may have a child with a rare disease.

  

  Me and My Gorilla Sister, Julie

• If you've looked at your child's milestones as tiny miracles when to other parents they might be "just part of growing up," you may have a child with a rare disease.

  

  Evie, blazing her own trail