Every Child Is A Different Kind Of Flower, And All Together, Make This World A Beautiful Garden

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Every Child Is A Different Kind Of Flower, And All Together, Make This World A Beautiful Garden

This quote really speaks to me and resonates with our family’s journey raising a child with special needs. I truly believe this pertains to ALL children but is particularly meaningful to parents raising children with various disabilities and medical challenges. There is a science and an art to gardening.  Some flowers need lots of sunlight, while others thrive in the shade.  There are certain flowers that are resilient and hardy and need very little water or care, whereas others need to be watered daily and require plucking and pruning.

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5 Lessons Learned Since The Diagnosis

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5 Lessons Learned Since The Diagnosis

One year…..One year since we received the call that would firmly change the projected path of our lives.  Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays.  PURA Syndrome - the first time I would hear the name of this rare genetic condition.  Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.

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Top Four Posts of 2018

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Top Four Posts of 2018

I started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.

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