The Extreme Measures We're Taking to Try to Save Our Daughter's Life

October 30, 2014 9:21 PM

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The Extreme Measures We're Taking to Try to Save Our Daughter's Life

The past five months have been quite the adjustment for me and my family. We made the very personal decision, a while back, to not come in direct contact with people or anything people have touched. We are doing this because my daughter has a terminal genetic illness called Sanfilippo Syndrome. She will be 5 in a couple of weeks. The disease is NOT contagious at all. We know of a clinical trial that could stop this disease that may be happening in just a few months' time. Whether Eliza will qualify, we don't know, but we don't want any sickness or virus to possibly make her go downhill faster. We want her to be as healthy as possible in the hopes a trial can save her life.

For me, the biggest adjustment was leaving my job as a pediatrician for special needs children. My time there was an ironic preparation for what we face now, and I am forever grateful for the examples of strength the families and children showed me.

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