When Things Change

Kate Milliken

Hi Rare moms.

In our session today, we spoke about change, which we all agreed could be hard, especially when we aren’t quite settled after making that change. How do you get through the uncertainty of the decision you’ve made? Support from others who love you can provide that gateway. Love is a powerful thing!  And so is friendship, which is brings me to a dear friend of mine.

This is Clau, whose daughter Cati lives with Hurler Syndrome. She's been my lens into living with rare disease.  It took a while for Cati to get diagnosed, but the moment Clau saw a picture of a child with the condition, she knew. The family was told Cati's only hope was a bone marrow transplant so they flew to Duke to start a process that was to include chemo, the loss of hair, fevers, the ICU, pneumonias, and uncertainty to everything. The top photo is the day before they stepped onto that medical road and the bottom is Cati today, 18 years old and fighting the odds every day.

If you are part of this community, you had that moment of change-when you knew things were going to be different than what you thought as a result of the diagnosis for you child/children. What do you remember about that day?  We invite you to respond on Mighty Networks or in the next workshop.

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