(that is my simple understanding! ;)
many children with cystinosis often exhibit rickets first as a sign that something in their bodies is amiss.
the kidneys flush everything through and thus, lose vital vitamins (say that 10 times fast! ha.) and minerals in the process.
rickets can cause pain when a toddler is learning to walk, as well as during other activities that young kids enjoy.
oh, she wanted to go roller skating.
because she is amazing, courageous, and yes, i dare say it...ballsy like that.
her memoir is now available through barnes and noble and amazon as well. however it is on sale at barnes. ALL the proceeds will be donated to cystinosis research. you get a remarkable tale of survival, grace, wisdom and gratitude, full of thought provoking questions and challenges to grow your soul, plus you are helping out our small community. now, the only thing better than that would be if the book came with a complimentary pack of peeps, right? ;)
an astoundingly beautiful excerpt:
I have heard it said repeatedly over the course of my life that having a child with cystinosis is a tragedy. There are those who hate the disease and feel guilty for bringing additional suffering into the world, especially the world of a child. This is a perplexing point of view for me, especially given the subjective and personal nature of the word suffering.
Maybe our genes are at war, but my world is one that is filled with healing blessings that wouldn't exist without cystinosis. Like the fictitious child of Ebregisel and Beretrude, I am a unique creation and the object of abounding love.
I wouldn't change a thing.