On May 27, 2025, our daughter Clara Jane burst into the world every bit as stubborn as her namesake. We had just 2 weeks’ warning that something might be wrong, yet nothing prepared us for the news that followed: her head was swollen with extra fluid, a brain bleed occurred during birth which severely damaged her, and the MRI showed extra brain folds that meant her brain had not formed the way it should have.
For 13 days in the Wisconsin Children’s Hospital NICU, we lived minute-to-minute—cheering when she gripped our fingers, excited when her swollen head receded enough for her to open her eyes, and trying to stay positive about our situation. She struggled to breathe, could not swallow, and her vocalizations were very weak. We had 9 days of continuous improvement, which was followed by a major setback. Late on June 6, doctors told us devastating news: Clara was affected by numerous genetic conditions, and her brain was so damaged she would never know comfort, would never remember a moment, or live anything near the life we had imagined for her.
We spent the next three days soaking her in love—reading stories, singing to her, and kissing her “lucky-toe” left foot (she had six toes, three of them in a cute tiny clump). On Monday, June 9, her breathing began to get worse. We held her against our hearts, stroked her soft hair, and whispered, “It’s okay to rest now.” She slipped away peacefully in our arms.
Clara still found a way to give. We were able to donate grafts of her skin and corneal tissue so another child might heal or see the world she never could.
Why we’re asking for help
- Medical bills – Insurance will cover much, but not all, of Clara’s intensive NICU care.
- Cremation & keepsakes – Including two keepsake roses, memorial jewelry with her footprint, and her urn.
- Family memorial trip – The day we receive her ashes we will begin a healing journey. We’ll carry Clara to the Smoky Mountains, a place filled with memories from our marriage. We’ll spread a portion of her ashes in a quiet overlook, then travel on to gather with both sides of our family for July 4th on a Michigan lake—a circle of love and remembrance.
Our detailed budget comes to about $7,000, but we’re setting a $10,000 goal so we can face any surprise medical invoices without fear. (We were told it would take ~3 months for the NICU bill to arrive)
Any funds that remain once bills are paid will be split 50/50 and donated in Clara’s name to Ronald McDonald House and the Children’s Hospital Wisconsin, whose staff gave us comfort and a bed during the hardest nights of our lives.
How you can help
Donate here on fundraiser (credit/debit/PayPal). Fees are 2.9% + 30¢ per gift.
Crypto friends:
Send ADA to $ClaraMemorial. (Converting ADA through Coinbase costs far less, so more of your gift goes straight to Clara’s legacy. We’ll post the running ADA total in updates so it counts toward the $10k goal.)
Every prayer, share, and dollar helps us to keep Clara’s light alive. Thank you for carrying our girl up the mountain with us.
With love and gratitude,
Roy, Danielle & Evelyn
