Olivia Grace came into the world on Sunday, April 24, 2016. Truly a one-of-a-kind gal, Olivia’s case was medically complex, and she remained in the NICU for the entirety of her short life as her team worked to understand, treat, and diagnose her condition.

Within days of her birth, we learned that Olivia suffered serious, life-threatening injuries during delivery, most all of which she recovered from fully during her first month of life. In addition however, Olivia was born with a genetic condition that – while obvious in its presentation – went undiagnosed until her last week of life. Olivia was born presenting severe hypotonia (commonly known as “floppy baby” syndrome) which is the medical word for low muscle tone, and results in muscle weakness. With the low tone and muscle weakness, Olivia was unable to wiggle and squirm like most babies, and more critically, experienced pulmonary and respiratory complications her entire life.

Olivia’s Diagnosis

Eventually diagnosed with a “non-5q” variation of congenital Spinal Muscular Atrophy (SMA), Olivia passed away on July 10, 2016.

Olivia’s Legacy

We will remain forever appreciative of the outpouring of love and support that we received, and continue to receive, from across the country. Our sweet Olivia touched the lives of many, many people in her short life, and we find great comfort knowing how loved she was by all. She knew only great things and love during her time with us on earth, and so many people have shared with us the same impression, that “she knew more love in two months, than most do in a lifetime.”

There was something really, truly special about our little girl.

As her mom and dad, we of course realize our own bias in saying this. But it’s more than that. It’s more than a parent’s bias. Olivia’s story touched more people that we could have imagined. She changed the hearts of hundreds and hundreds of people – in less than 3 months. The messages we received during her life, but especially since her passing reinforce this. They are deep, they are profound, they are heartfelt and life affirming messages that all tell us the same thing: Olivia was truly special, and our story – her story – affected people’s core sense of self and purpose.

You can read more about Olivia’s story starting with a few key posts, or follow the entire journey by moving over to the blog. We also shared some more personal reflections (and may continue doing so moving forward), which you can find under Stories from Mom and Stories from Dad.

• Olivia’s Birth Story: The Delivery
• Olivia’s Birth Story: The Trauma
• Olivia’s Story: What We Know (part 1)
• Gene Sequencing Findings (part 2)
• Olivia’s Final Medical Story (part 3)

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