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#parentingrare

August 28, 2015

Last year at this time I was sobbing as I typed a Facebook message explaining to friends, family, and cyberacquaintances that my daughter had been kicked out of a clinical trial for a new therapy to treat patients with x-linked hypophosphatemia. This summer, we learned that our daughter might once again be a candidate for a pediatric clinical trial, and our daughter began the process of signing consent forms.  This time she looked at me and with all of her eight-year-old wisdom said, “mom, I will sign these papers, but only if you promise not to cry if I don’t get in this time.” I promised, and tomorrow morning my daughter should receive her first dose of KRN-23. 

 

There is little in life that can prepare a person for parenting a child with a rare disease, and I am not sure that there is anything that can prepare one for participation in a clinical trial. I am both thrilled and terrified that our daughter is going to receive this new medication. But there is no way to know if the drug will deliver on what researchers believe is its promise until we try it. I felt the same way last time we signed up for the trial, and when we were kicked out I was distraught. Part of me knew that this meant it simply was not time for our daughter to be on the drug, but another part of me felt like we simply drew the short straw. Later I realized that we were still part of the research; we still helped in our own small way. When our child was disqualified from the study, they changed the protocol so that other families would not get to that point in the process and receive the same kind of news after already preparing themselves for a very different outcome. So our little part counted. We contributed. 

 

Tonight we are having dinner with a friend I met through the XLH Network. He was in the clinical trials for the therapy my daughter was on prior to this trial—the standard therapy for XLH. His experiences, however, were much different and far more difficult than ours will be. He spent months away from home and family by himself in a hospital, while the primary inconvenience to our child is significant travel. It occurs to me that our daughter’s health is better because of him, and I can only pray that our decision to enter this strange world of research and uncertainty will yield similarly positive results. I pray that this is the best path for our child and that this therapy will be life changing and not have the negative effects of her current therapy, but I also pray that we, in our own small way, are making a difference in the lives of others. 

 

In the end, perhaps it is the teacher/researcher in me that finds this process appealing. Wandering into the unknown is hardly new for me. Yet my unknowns consist of words and spaces, of stories and locales. To rush into the unknown with our child seems different. But parenting even the healthiest of children is an exercise in the unknown, and, ultimately, our story matters (as do all stories). So I plan to tell the parts of the story that our daughter is comfortable sharing, and I hope that one day she understands and sees the impacts of her decision. 

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