Couple's Daughter Dies at 15 Months from Rare Disease. Then They Made Her into Stones — Here's Why (Exclusive)

Kaylee and Jake Massey's daughter Poppy died in April from TBCD complications, a rare genetic disorder that Kaylee says "most geneticists have never even heard of"

<p>Courtesy of Kaylee Massey (2)</p> Poppy Massey (L), Parting Stones (R)

Courtesy of Kaylee Massey (2)

Poppy Massey (L), Parting Stones (R)

• Kaylee and Jake Massey's daughter Poppy was diagnosed at 9 months with the rare genetic disorder TBCD

• In April, Poppy died at 15 months old while in the ICU after being admitted for a respiratory infection

• Following Poppy's death, the family decided to turn her ashes into Parting Stones, which the Masseys keep in their house as a reminder of their little girl

After losing their daughter at 15 months old, an Idaho couple decided on a unique and special way to keep their late little girl at home.

Kaylee and Jake Massey went through the unimaginable last April when they lost their daughter Poppy, who was diagnosed at 9 months with the rare genetic disorder TBCD.

"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," Kaylee tells PEOPLE. "When she was 5 months old is when we finally got that, and the MRI showed that the center 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."

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A few days before Poppy's death, the infant was admitted to the hospital after Kaylee noticed her daughter was "having a really hard time with congestion" when the whole family came down with "this respiratory crud."

"I was just panicky because I felt like Poppy couldn't breathe, and we were so heightened with Poppy," she recalls.

Doctors found spots of pneumonia in her lungs and Poppy also tested positive for a respiratory infection. Still, Kaylee says she and her husband didn't expect this hospital visit to be as serious as it turned out to be.

"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."

<p>Courtesy of Kaylee Massey</p> Poppy Massey

Courtesy of Kaylee Massey

Poppy Massey

The next morning, Kaylee and Jake, who are also parents to daughter Rosie, 8, and son Peter, 6, were told that they needed to move Poppy to the 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 it came time for Kaylee and Jake to decide what they wanted to do with Poppy's body, the couple opted for an option they had never heard of before: Parting Stones.

"We were sitting in the funeral home and they handed us a catalog 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."

<p>Courtesy of Kaylee Massey</p> Parting Stones

Courtesy of Kaylee Massey

Parting Stones

"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 catalog, 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 catalog 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?"

<p>Courtesy of Kaylee Massey</p> Parting Stones in Poppy's swing.

Courtesy of Kaylee Massey

Parting Stones in Poppy's swing.

A few months later, the family received a "beautiful box" complete 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 honor 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."

<p>Courtesy of Kaylee Massey</p> Massey family

Courtesy of Kaylee Massey

Massey family

For Kaylee, she says the most "heartbreaking" part was to see how few stones there were. "There's 13 or 14 little stones. Her body was just so tiny and so of course there's not going to be many stones, but I think that just broke me a little bit."

The family keeps the stones in Poppy's swing as "that's where she would be if she were in our home and if she wasn't in our arms."

"We're not scared of anything happening to the stones because it's not like an urn or anything," she adds. "They are in their box right now, just because the box is also really pretty. But they are out in our home and we like it because we have the option that if we ever do want to spread her ashes, we can take a stone and leave it someplace."

<p>Courtesy of Kaylee Massey</p> Rosie, Peter and Poppy

Courtesy of Kaylee Massey

Rosie, Peter and Poppy

Kaylee also shares that the family continues to leave Poppy's things out at home so they may "have reminders of the joy that she was in our lives."

"We as a family, we talk about Poppy all the time, and we talk about her in such a positive way," she says. "We keep everything bright and light and fun for our kids, and we encourage our kids to play with her toys."

"We don't want them to think that her toys cause us sadness, we want her toys to cause us joy," adds Kaylee. "And so our kids play with her basket of toys, or they'll move around her bassinet crib to help create their fort and we're like, 'Oh, Poppy's helping you guys out today.' One day I might put them away, but my heart is absolutely not ready yet."

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