who we support

We support the families of babies with critical medical needs, rare disease, and those experiencing infant loss. Our programs seek to relieve the emotional, mental, and financial stress of families during unexpected and extraordinary times of need. While we organize many ongoing programs (such as NICU care packages), we also look to support families with a more specific, unique need. Individualized support might look like one on one mentorship, providing a financial grant for grief counseling or to help pay for funeral expenses, or support finding and connecting with the best available research labs or rare disease advocates.  

nicu families

Families experiencing a long term NICU admission with their newborn.

infant loss families

Families who’ve experienced recent infant loss or child loss.

rare disease families

Families with children with known or undiagnosed rare diseases.

nicu families

Staying ’round the clock in the hospital sure ain’t pretty.

This we know for sure. We also know it’s a parent’s first instinct to stay by the side of their child, to be with them, to care for them, to protect them. So when your newborn is inpatient in the NICU for any period of time, it’s no surprise parents who are able often spend every waking moment with their child.

Our family spent 78 days in the NICU with our first daughter, Olivia. From sun up to sunset (and often beyond) we lived in a sterile hospital room. We ate hospital cafeteria food and drank hospital coffee. Showers were infrequent, and laundry even more so. Our hands were chapped from hundreds of hand washes and constant sanitizer, and our physical bodies were simply worn down. 

No matter how often a loved one would remind us to take care of ourselves as well, our child came first. Always.

It’s a great honor for us now to curate an assortment of personal care items for parents experience a long term NICU stay. We hand pick each item, we assemble the package with love and attention. We focus on unique yet practical items in hopes of  creating a moment of surprise and delight for mom or dad, or whomever receives our care package.

We happily curate care packages for families around the country. If you know a family with an infant in the NICU, please let us know.

Click the button below to request a care package for your loved ones!

In addition to individual care packages for NICU parents and families, The Pink Zebra Club also gives back to Children’s Hospitals and NICUs through:

  • direct financial gifts and monetary contributions to hospital specific campaigns
  • large annual donations consisting of items from the NICU wish lists
  • providing gifts to families during holidays – such as Mother’s Day or Christmas

infant loss families

Reading and writing can be a powerful outlet for those going through traumatic life events, and infant loss is by all accounts, incredibly traumatic. And yet at the same time, unfortunately infant loss is not a common topic of conversation.

In the wake of infant loss, parents often feel completely isolated, alone, and misunderstood. No one can fully prepare you for the experience, and there are far fewer resources available to grieving parents than you might imagine.

It is a lonely, lonely experience. And for us, reading, writing, and talking were our emotional outlets. Reading about grief and loss. Reading about child loss. Reading stories of hope, grieving gracefully, and life after loss.

We send curared gift boxes, art work, journals, emotionally appropriate books on child loss, grief, and hope to grieving parents. We cater our book selection based on the family’s unique circumstances, and we do our best to send books that we feel will meet the parents where they are in their grief journey.

Sometimes we send a grief journal, sometimes we send books for older siblings, sometimes we send faith based books on life after loss. Those are just a few examples.

We will select (and ship) emotionally appropriate books and journals  to parents and siblings around the country. If you know a family who recently experienced infant loss, please let us know.

Click the button below to request a support package for your loved ones.

rare disease

In 2019 we expanded our vision for The Pink Zebra Club to include a focus on undiagnosed rare disease. Our family is currently in the middle of a desperate search for answers, and sadly we are not alone. 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.

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