Dear Congress

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.

Dear Congress,

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 brainstem and destroying her quality of life. No starting off with a simple surgery for Hana. This was the big time. This surgery would be 7-10 hours.

As Hana was wheeled into the pre-op room, I followed behind. Once Hana was moved to a small room, I located a trash bin behind a partition where I was able to retch out the fear that was eating out my insides. Composed and wearing my soft, reassuring smile, I sat beside her until they took her away. I tried to reassure myself that the fear was gone and during the first few hours of surgery with the help of a friend, I believed it.

As the 8th hour neared with no word from the doctor, the fear was consuming me. I can not let this fear take away the mother Hana needs, so I find a bathroom where I retch until the fear is expunged. Her surgery lasts nine hours and Dr. B. assures me all went well, but this does nothing to prepare me to see my brave, stoic child begging someone to stop her pain. I try to soothe her with my voice which sounds calm and unafraid. She is given pain meds and put in the CCU. It is a long, restless night where Hana complains mostly of nausea. The morning brings worsening nausea and vomiting. She is having a bad reaction to the anesthesia. It takes three medications and many hours to get the nausea under control.

Hana’s surgical story has not ended. I am writing to you from South Nassau Hospital. Hana lies next to me with her hands wrapped in blankets because for an unknown reason they have turned as cold as ice. She is asleep, but her face is not peaceful. It is pain. In two hours, Hana will be 18 and all she wants is to go home.

When legislation comes across your desk about money for research or treatments, please think of Olivia and Hana and the millions of children like them. Think of their mothers whose tears are shed in the shower, into their pillows or alone in their car. Make the choice to end suffering. I have to stop here. I need to retch.