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Below is Olivia’s eulogy, which was written by her mother, and provides an in-depth look into Olivia’s journey, diagnosis, condition, as well as her family’s perspective. The purpose of sharing this intimate message is to inform, educate, and spread awareness of how genetic disorders and disease impacts children and families, with the hope that Olivia’s story will impact young children alike, assist their families, help drive change within our healthcare system, as well as, reshape the way the world perceives and cares for a forgotten society: people with genetic disorders, medical complexities and severe disabilities.

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“I searched to find the perfect words to share today. But everything I had to say to Olivia has already been said. When alone, I’d talk to her and pray over her. I told her I’m sorry and I that tried. Mommy and Daddy both tried. I told her Jesus loves her and He’ll take great care of her. I told her she can let go, and even when she’s gone, we are forever bonded. I continuously prayed for her peace and comfort. I prayed that Olivia would take her final breath in my arms.

 Losing a child never makes sense. But I know Olivia’s life has meaning, so I’ll share some of her story.

Our family didn’t see this coming. I had a healthy pregnancy and a seemingly healthy baby. However, at 36 weeks pregnant I felt a decrease in movement and pushed for an ultrasound. I was induced at 37 weeks. And a few hours after Olivia was born, a nurse saw her turn blue in the nursery. We thought and had prayed that it was a one-time fluke, but multiple life-threatening events followed, so she was rushed to the NICU.

 5 hours after giving birth, I packed my things and left the hospital to be with her. It was not a typical recovery or postpartum period. From Day 1, Ben and I put our heads down and began fighting for our daughter’s life. And we didn’t rest until we had answers.

 Every leg of this journey has had its unique difficulties, but there was a lot of suffering in the unknown.

 As weeks went on, the days were long and getting longer, but we still had hope that Livie would be OK if we could just figure out what was wrong. And although we were tired, hope kept us going. Then came the call from the geneticist at UVA when Livie was 6 weeks old. She told me with 98% certainty, Olivia had an extremely rare, extremely severe brain disease. It’s called EEF1A2 related neurodevelopmental brain disorder. There is no cure. So my first question was, “What does this mean for Olivia”? The doctor said, “Well, from what is known, there are only about 100 other children in the world that share this genetic mutation, and only about 7 children that share her specific variant, but Olivia would likely never walk, never talk, could have trouble seeing, and might not hear well”. There’s also a good chance she’d develop epilepsy.

 Ben and I were obviously in a state of shock, and we had so many questions. But the thing about a disease this rare is that there aren’t answers. There’s no blueprint. Everyone was learning something new from Olivia. We even reached out to the leading researcher of this genetic mutation; a scientist out of the UK, and she had told us that she and her team are working towards a cure, but they are still years away.

 That day Ben and I went home where we cried, and screamed, and just held each other. What do you do when hope is gone? A lot of people.. my family and friends, noted our strength, but it wasn’t strength that helped carry us. In fact, I personally had never felt so weak or rock bottom. What kept us going was love. Our love for Olivia. And God’s love for all of us. Love got us out of bed, love drove us back and forth to the hospital, love had us searching for cures, love had us show up for one another and for Luca. Love is all we had left.

 As Olivia’s parents, we were not only devastated, but terrified. There was no telling how long she’d live for, or what her developmental milestones would look like.  So do we prepare ourselves for her death? Do we prepare ourselves to be parents of a medically complex, severely disabled child? How do you do both at the same time?

 I had so many fears. Did we have the heart for this? Are we capable? What about our life plans? How will this affect our careers and finances?  Our relationship with our son? What would our overall day-to-day look? How will Luca handle this when he becomes old enough to understand? Will kids make fun of her or give her a hard time? Will people stare at her? Will they look at her at all or will they look away because they’re embarrassed and don’t know what to say or do? This was clearly uncharted territory for us… a world we knew nothing about.

 I grieved, every day. I thought, “How can I help my daughter achieve a human experience that would bring her joy”? I really struggled with this. So I did my research and I found other families with children who have rare diseases, have medical complexities and are severely disabled. I wanted to know how they did life. I will tell you, it’s really hard.

 Since there was nothing more medical professionals could do for Olivia at the hospital, we were able to finally bring her home mid-September. And we loved on her for 7 more weeks. We witnessed her first smile during bath time, she loved looking out the window when the sun was shining, she took walks around the neighborhood and on the trails, and her brother loved giving her goodnight kisses and telling her, “night night baby”.

 Although short in nature, Olivia’s life holds purpose. Olivia showed Ben and I what we’re capable of as parents, she strengthened our faith, she brought people together, and Olivia  introduced us to the world of disease and disabilities; one that I consider to be a forgotten society. Our world is not built for people like Olivia or their families. And that’s what inspired us to establish Olivia’s Light. A 501(c)(3) non-profit organization that will help children with genetic disorders, medical complexities and severe disabilities. Our family had so much support and we still struggled. We had other family members help take care of our son, we had meals sent to us nearly every day for 3 months, and because Olivia was finally diagnosed, she qualified for Medicaid, which opened the door to free at-home nursing care, medication, and medical equipment. What do families do that don’t have any of this? What about the children who aren’t diagnosed? How are they supported? Every child and every family deserve the best care. And through Olivia’s Light, we will advocate for this cause on their behalf.

 On October 29, 2022, Olivia took a turn for the worse around 11AM. And for 17 hours straight, she was surrounded by her loving family. She was held the entire time. Olivia’s hospice nurse told us that it could be hours to days until her passing, so that night around 11PM I passed her over to her Grammy and went to sleep for a few hours. Around 130 in the morning I woke up, and Grammy and Poppy told me that I should go back to sleep. I laid in bed for about another hour. But around 3:15, my body felt like it was on fire. I sprung out of bed and into Olivia’s room and told Grammy, “I need to hold her”. Both Grammy and Poppy left the room, and Olivia passed away in my arms minutes later…It was 3:24 in the morning.

 If you lie down, you will not be afraid; when you lie down, your sleep will be sweet. Proverbs 3:24”