Couple's Daughter Dies From Rare Disease, Then They Made Her Into Stones

After the heartbreaking loss of their 15-month-old daughter, an Idaho couple, Kaylee and Jake Massey, chose a distinctive and meaningful approach to ensure the presence of their late little girl in their home. In April 2023, the couple endured the unimaginable when Poppy, their daughter diagnosed with the rare genetic disorder TBCD at 9 months old, died.  

"When she was born, we knew absolutely nothing. She was just perfect to us. When she was around 4 months old, we noticed that her vision wasn't developing properly. And so after some doctor's appointments and ophthalmologist appointments, it was decided that she needed an MRI on her brain," Mrs Massey told People. "When she was 5 months old is when we finally got that, and the MRI showed that the centre part of her brain, the corpus callosum, hadn't developed properly, if at all."

"After that, we just continued to get diagnosis after diagnosis, but there was no conclusive diagnosis... After doing the most advanced genetic tests on the market, we got the most horrific news to find out that she had a genetic disorder that I think at the time, she was the 38th child in the world diagnosed with," she continues. "The geneticists had never even heard of it before... I don't think we realized what a severe diagnosis it was. We were just really naive in that."

A few days before their daughter's death, the infant developed a respiratory infection. She was admitted to the hospital, "I was just panicky because I felt like Poppy couldn't breathe, and we were so heightened with Poppy," she recalls.

The doctors informed the couple that Poppy had pneumonia in her lungs and also tested positive for a respiratory infection. 

"There have been other kiddos with this TBCD genetic condition that have had pneumonia and hospital stays, and they're there for a week and they go home. And so we had only heard from these other families that they get over it, and then they go home, and they live to be 3 to 5 years old. We were blindsided that her body couldn't take it anymore."

The following day, Kaylee and Jake received the news that they had to transfer Poppy to the Intensive Care Unit (ICU). 

"They said it in such a positive way. They said it like, 'They have such better equipment over there, Poppy will get the care she needs.'" 

"It was right as we were pushing her bed into her new room in the ICU...and just about right as we parked her bed is when her eyes kind of looked up at me and I was like, 'Oh, Poppy, your eyes are open.' And then her heart just stopped. And so immediately, the charge nurse started doing CPR and people were just yelling, 'call code,' and frantic chaos ensued at that point."

"That was probably around 6:00 a.m. when she coded, and so we had about five hours with her. We called our parents, who were watching our other two children, and they were able to come and say their goodbyes," she shares. "We felt it was very important to have Rosie and Peter there to say goodbye ... we had to tell them, 'Your sister's going to die today.' "

When the moment arrived for Kaylee and Jake to decide on Poppy's remains, the couple chose an option that was entirely new to them: Parting Stones.

"We were sitting in the funeral home and they handed us a catalogue for us to decide what to do with our daughter, and it was just so horrible to flip through these pages and have to pick out an urn," she says. "We knew we wanted cremation because we wanted her ashes home with us. Having two young kids at home, we did not want anything in our home that our kids would be fearful of, fearful of breaking, fearful of looking at, and we felt like an urn might have that presence in our home."

"We didn't feel like that was right for our family, but honestly, no option felt right for our family. We were just flipping through this catalogue, and there was this picture of these really pretty stones, and we're kind of a nature family. We like to go outside and do things. And I remember my husband and I both kind of stopped and looked at that page," she continues.

"We brought the catalogue home, and we thought about it for a couple of days before we gave them our answer. And it felt like if all the options were bad, this one felt like the least bad option. We chose what was least bad for us, and we also tried to put Rosie and Peter first. What would they be most comfortable around?"

A few months later, the family received a "beautiful box" with a handwritten note. "It was so beautifully said. It was something like, 'Thank you for entrusting us with your daughter. It's been an honour to have her in our care.' It felt so personal, and I remember opening that card and just feeling like these people cared about my daughter."

"We continued to open up these little bags that had the stones in them, and I remember initially, the stones were so beautiful. They're white with little specks of yellow in them, and they say that they don't do anything to the ashes," Kaylee explains. "I don't know what the little specks of yellow are, but they feel like such a little special gift."