Kaylyn - 31-Days of Awareness and Giving

Kaylyn is the youngest in our family. She was diagnosed with Dandy-Walker in utero at around 26 weeks. We had never heard of DW before and that’s how we came to know about The Dandy-Walker Alliance. Pregnancy was uneventful, but at birth Kaylyn came out not breathing. The team had to work on her for a few minutes and eventually we heard her cry. We had a brief NICU stay and got to go home about a week later. 

Kaylyn has other medical issues that have had to be addressed, so we elected to have genetics done. Come to find out Kaylyn has a genetic mutation of PTPN11 gene, also known as Noonans Syndrome. This was our umbrella as to why she has so many systems affected.

Despite neonatology telling me to expect the worst and hope for the best, Kaylyn is thriving. Yet, she may struggle with things and take longer to grasp, but eventually she finds she is capable. And, sometimes she may have to adapt, keeping her doctors on their toes.

She loves being artistic and many times you will find her painting rocks or sea shells. She has a vivid imagination, love for all things fairies and unicorns, and is discovering music. And, she likes to go to the therapeutic riding center where she rides horses as part of her equestrian therapy.

The Dandy-Walker Alliance is committed to supporting families like Kaylyn's along their Dandy-Walker journeys, raising awareness in the medical community and beyond, and advancing research into its causes and potential new treatments. You can support kids like Kaylyn worldwide by selecting a donation amount below. 

All money raised on this page goes toward helping families, raising awareness, and supporting research initiatives.