We created The Pink Zebra Club shortly after the death of our infant daughter, as a way to recognize and support other families like ours:
- those with children with critical medical needs,
- those experiencing long term NICU stays,
- and those newly bereaved parents after child loss.
Being in the NICU is never a welcomed experience, but we know first hand that being admitted for an extended length of time is incredibly isolating. It is tiring. It is taxing. It wears on our bodies, and clouds our mind. It exposes every emotion, good and bad. It effects families physically, mentally, emotionally, and financially. To lose an infant only amplifies all of those feelings, exponentially.
The Pink Zebra Club recognizes and supports families going through these experiences.
We acknowledge their situation.
We provide a helping hand.
We show them they are not alone.
And most of all we encourage them to celebrate every moment with their children, to make every moment bright. For if we’ve learned anything through our personal journey, it is the lesson of time.
We are Luke and Whitney. To each other we are husband and wife, and to our three special children we are mom and dad. Olivia, our first born daughter is now our angel and the inspiration behind The Pink Zebra Club. Gemma is our miracle here on earth. And Rory, our third child and only son, is now our angel in heaven holding hands with big sister Olivia.
Olivia was born on April 24, 2016 and passed away just 78 days later from a rare form of the genetic disease known as Spinal Muscular Atrophy (SMA). Although we had a perfectly assembled nursery and a closet filled with outfits waiting for her at our house, the only home Olivia ever experienced was a small room in the NICU at Golisano Children’s Hospital in Rochester, NY. For 78 days those walls were her house, the staff her best friends.
Despite being short and riddled with compounding medical challenges, Olivia’s life was filled with greatness.
Great care from her nurses and doctors. Great books, great toys. Great clothes from her mom. Great music from her dad. And most importantly, great, great, love from everyone whose life she touched.
Between cute patterned sheets, colorful blankets, and big bows, Olivia’s room in the NICU was always bright. It was always filled with unconditional love and grace. It was joyful, against all odds.
We recognized early on that every day Olivia spent in the NICU, was another day we were able to spend with our daughter. And every moment spent with our daughter was a moment worth celebrating. Every moment was to be cherished, not mourned.
After her death, we searched to find new meaning in our lives, and created The Pink Zebra Club as a way to connect with and support other families like ours – in the NICU and after infant loss.
In 2019 we expanded our vision for The Pink Zebra Club to include a focus on undiagnosed rare disease following the birth and death of our son, Rory. Affected by the same disease as Olivia, Rory lived for three weeks. Having two children affected by a very rare form of an already very rare disease confirmed that our family is impacted by an inherited, autosomal recessive disease. Until Rory’s life, we had prayed that Olivia’s disease was spontaneous, and would not affect our family again.
Now, the search is on for answers. We were previously surrounded by the child loss community, and the rare disease community, and we’re now also hyper focused on the undiagnosed rare disease world. We want more research, more advocacy, more options, and more answers. For our own family, and for others.
Each year our initiatives reach families across the country. Learn more about the unique ways we support parents and families, and what you can to do help.