On Losing Baby To Rare Disease, US Couple Made Her Ashes Into Stones

A US couple found an innovative way to preserve the memories of their daughter Poppy, who died in April from a rare genetic disease. Kaylee and Jake Massey's 15-month-old daughter died in April, leaving their family of four distraught. The couple, based in Idaho, USA, then decided to turn Poppy's ashes into stones so they could keep her with them in some form forever. "They feel like such a little special gift," Kaylee told People Magazine describing her feelings opening the box of stones for the first time.

Poppy was diagnosed with a rare condition called TBCD when she was 9 months old. After a tough battle through a challenging illness, Poppy passed away last April. Her parents and two elder siblings survive her, 8-year-old Rosie and 6-year-old Peter now cherish her presence with the stones.

Poppy's TBCD Diagnosis

Speaking to People Magazine, Poppy's mother shared how she found out about the disorder and what exactly it is. When Poppy was four months old, Kaylee and Jake noticed that her vision was not developing properly so the doctors took an MRI scan and found that the centre part of her brain, the corpus callosum, had not developed properly. 

"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," Kaylee expressed to People, adding that the actual diagnosis took several months.

She added, "The geneticists had never even heard of it before... I don't think we realised what a severe diagnosis it was. We were just really naive in that." Poppy suffered from difficulty breathing due to lung congestion. A few days before her death, she was admitted to the hospital, where doctors spotted pneumonia in her lungs and diagnosed her with respiratory infection. She was being moved to the ICU when Kaylee noticed that her heartbeat had stopped. 

"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," Kaylee expressed. 

Turning Her Ashes To Stones

After the funeral, the Masseys had to decide what they wanted to do with Poppy's body. "We knew we wanted cremation because we wanted her ashes home with us. However, 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," Kaylee told People.

That's when they came across an organisation called Parting Stones that turns the ashes of deceased loved ones into stones. A few months later, the Masseys received the stones in a 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 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," Kaylee said.

She added, "There are 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." However, being able to keep Poppy forever with them made her feel comforted. "We as a family, we talk about Poppy all the time, and we talk about her in such a positive way," she told People. "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."