This story is not for the moms in the rare disease community because they are this story. This story is for the mostly old, mostly white, mostly men who sit in D.C. and decide who will and who will not get treatments.
My children are sick. My children will remain sick for the rest of their lives because my children do not have a treatment. Yes, this is hard to believe. What is more difficult to believe is that there are tens of millions more children just like mine who do not have a treatment. Some of these children are suffering, many are dying and many mothers struggle to do the impossible.
The specifics of my children’s disease are not important. We are the orphaned, the overlooked, the misunderstood. I would like to share with you from my mother’s heart, some of the events of our lives.
I would like to share what it is like to carry your child into an operating room. Olivia, my oldest, had her first surgery at the age of four. I carried her tightly in my arms, while my heart pounded against her tiny chest. She didn’t know. The operating room is shockingly bright when compared to the hospital hallway. The number of masked medical personnel was both comforting and horrifying. The dozens of other times I brought her into surgery were just like the first. She was always curious at first, but when the mask went on, the tears came, big tears from her frightened eyes. I had no tears. My tears were fought back so that my face remained the mother she knew, the one with the soft, reassuring smile. The minute her beautiful eyes were closed, the tears came, my knees buckled and I had to be helped from the OR. Every single time. This does not get any easier.
I would like to share the story of bringing my daughter, Hana, for her first surgery. She had her first surgery at the age of seventeen, so I was not allowed to go to the operating room with her. Hana’s surgery was to correct a malformation in her brain and to fuse her neck so that it would stop kinking her br