Noelle’s Story

When we initially received Noelle’s diagnosis, we grieved the loss of all the typical long-term dreams that we had for our only daughter and acknowledged that we were going to need to live our lives differently. We then decided that PWS would not define her or our family. Certainly there are parts of our lives that have been non-negotiable: a locked kitchen, medication, additional supervision, and advocacy efforts. However, every day we chose to push each of our limits in little ways, without clear cut expectations for who Noelle would eventually become and might create a sense of failure if we did not attain them. Noelle’s Journey


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