Herbs for rare diseases
Life has a way of being unpredictable. It would be wonderful if we could always choose the road we want to go down, but sometimes it is chosen for you. Thus was the case when my daughter was diagnosed with Hereditary Spastic Paraplegia, a rare disease that robs a person of their ability to walk. The direction our family was heading in was suddenly and irrevocably changed forever.
Brianna was born five years ago today and for the first year of her life, she was a “normal” baby –cute and happy, hitting all of her milestones on time. As I look back now, I am so grateful for that year. We had one precious year where we didn’t have to live in the land of doctors’ visits & medical tests, diagnoses & misdiagnoses, internet research, seeking answers to questions I never thought I would have to ask. Ignorance can be bliss, and we were blissfully ignorant that anything was wrong that first year. Yet it soon became obvious that ignorance would no longer work for us. We started to suspect something was wrong around her 1st birthday as she always stood on her toes and never was able to stand independently, cruising and walking were nowhere to be seen.
So at the age of 15 months we had our first visit with an orthopedic surgeon who told us just to wait it out and come back at 2 years of age. Yeah right! When you know there is something wrong with your child the last thing you want to do is wait around. While we did pass some time, we ended up seeking a second opinion before then. MRI’s of her brain and spine came back normal, yet 3 days after her 2nd birthday she was diagnosed with cerebral palsy and we were told that our daughter would never walk normally, if at all. When we questioned this doctor about the CP diagnosis, he said “If it walks like a duck and quacks like a duck, then it’s probably a duck.” and sent us on our way.
Cerebral Palsy. She will never walk normally, if at all. These words seared through my brain, my heart was simply in agony. For while I knew there was something wrong with Brianna, I had mommy blinders on and I hoped that there could be something done to fix it, to make it better. Yet this doctor told us there was nothing to be done – no cure, no medicine that she could take to alleviate her symptoms, no surgery to make it go away.
We found the cerebral palsy clinic at the Children’s Hospital in Columbus, Ohio and she was scheduled in for a battery of tests by an array of doctors and therapists. Except for the obvious gross motor issues, she passed everything with flying colors.
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