01/25/2026
Last week, we presented our $100,000 donation to UVA Health Children’s Pediatric Palliative Care. The endowment, also called the “Olivia’s Light Pediatric Rare Disease Patient Fund”, will cover medical costs that are not covered by insurance. The intention of this fund is to alleviate families from the financial stress that oftentimes comes with caring for a child with medical complexities. With rare conditions, you never quite know what new needs the child will require tomorrow, next week, or a year from now.
Before Olivia died I imagined what her life might look like and what her needs might be. She would have been completely dependent on us as she was expected to be non-verbal, non-ambulatory, severely autistic, and epileptic. Considering you never know what Medicaid will cover year to year, the idea of the looming financial costs while simultaneously caring for her, managing my grief and her anticipatory death, and also caring for my son Luca, just crippled me. It was so overwhelming. It’s my hope the new Patient Care fund will provide relief to families like ours when needed.
Finally, we found UVA Palliative Care most deserving of this donation, as we are first-hand witnesses to the expert guidance they provided when it came to making the hardest decisions of our lives. For example, when Olivia was declining rapidly, our hearts knew she was dying. Despite not being ready to let her go, we didn’t want her to suffer any longer. To provide her excellent care and comfort, we leaned on Palliative Care, medical professionals, in order to make confident decisions. Deciding when to hold back on feeds or when to bring in hospice broke me, but UVA’s Joy Miller and Patrick Ahern supported us through every impossible, heart-wrenching decision along the way.
Ben and I think of our daughter Olivia every day. We miss her every second. It’s a privilege and blessing to continue her purposeful mission in life, and after death.
UVA PC- Thank you for taking great care of our little girl and for all the work you do.
Reynolds GM-Subaru - Thank you for choosing Olivia’s Light for your Share the Love event and contributing over $40,000 to our palliative care fund.
