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Penny’s Pack

Portland, OR

Story

This page is for the Waterman family and for the most beautiful, sweet, and amazing Penny Jo. Penny was diagnosed with Infantile Spasms at four months old. Infantile Spasms is a rare and difficult form of epilepsy for babies. Her infantile spasms is caused by an even more rare gene mutation. This diagnosis changes their life, and will require lots of attention and care. Getting this diagnosis has been incredibly challenging, difficult to understand, and hard to deal with. Blaire and Thomas are doing everything they can to provide the best life for Penny. This involves hours of research, different medications, multiple hospital visits, special studies, gene therapy...the list goes on and on. This road is unfortunately unending, full of constant advocating, unknown treatment success, and the need for continuous love and support. Penny is loved beyond belief, and we need to continue to remind them all of this. We wanted to create a space for people to show them how much she is loved, and how much Blaire and Tom are loved and supported as her parents through all of this. Penny was gifted the most amazing parents, an amazing support team, and Penny's Pack will be fundamental in her success. The one thing we know for sure is that Penny, Blaire, and Thomas will know nothing but support and love through this very difficult and challenging journey.


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