Our daughter passed away at 15 months from a rare genetic disorder, we decided to compress her ashes into parting stones so we can still hold her

A young couple have had their daughter’s ashes solidified into parting stones after losing her to a rare genetic condition in April last year.

Kaylee and Jake Massey, from Idaho, had their lives turned upside down when their daughter Poppy was diagnosed with Tubulin Folding Cofactor – or TBCD – a serious genetic neurological disorder at just nine months old.

The parents didn’t know Poppy had a rare disease until they were four months old, when they noticed her vision wasn’t forming properly.

They went back and forth with doctors for months until they received a conclusive diagnosis.

“After doing the most advanced genetic testing on the market, we got the most horrifying news: we discovered she had a genetic condition that I believe made her the 38th child in the world to be diagnosed at the time,” Kaylee shared . People.

Six months later, Poppy tragically died in intensive care. To remember Poppy, the Massey’s challenged the norm and transformed her remains into dividing stones.

When Poppy was born, the parents had no idea that their little girl had been born with one of the rarest genetic abnormalities.

It wasn’t until she was four months old that Kaylee and Jake, who have two children together, Rosie, eight, and Peter, six, noticed Poppy was having problems with her eyesight.

The parents took her to hospital, where an MRI scan showed that the center of Poppy’s brain had barely formed.

She was diagnosed with several conditions before medical professionals turned to TCBD – a condition caused by a genetic mutation on both alleles of the TCBD gene.

The parents remained convinced that Poppy would stay with them for a few more years. In an explanation TikTok about Poppy’s condition, Kaylee explained, “The average lifespan for children with this condition is about three to five years.”

However, after being diagnosed, Poppy seemed to suffer from breathing difficulties.

She tested positive for a respiratory infection and doctors also found pneumonia in her lungs.

The parents remained optimistic, but when Poppy was admitted to the ICU due to the infection, her heart stopped.

Poppy (pictured with Kaylee) was diagnosed with TBCD, a rare genetic condition, at nine months

Poppy’s parents didn’t know she had a rare genetic condition for the first few months of her life

The family had five hours to say goodbye to Poppy before she tragically passed away.

Jake and Kaylee decided to remember Poppy in an unconventional way.

The family wanted to keep Poppy close, but Jake and Kaylee were afraid their children would break the urn or be afraid of its presence.

They decided to pass on stones to prioritize Rosie and Peter and what they would feel most comfortable with.

However, when they received the box, the care that went into Poppy’s stones exceeded the family’s expectations.

“It felt so personal, and I remember opening that card and feeling like these people cared about my daughter,” Kaylee said.

Kaylee has since gotten to work TikTok to share insight into the family’s grieving process and special memories of Poppy.

Kaylee and Jake took to the stage to explain their decision to choose parting stones.

“I want to start by saying, when you sit down at a funeral home and they present the options to you, either option is bad,” Kaylee said.

‘We chose to cremate her and a step further we chose to use a company called Parting Stones to have her ashes turned into stones, and the reason for that was because… it was the least worst option ,” Jake said.

“It seemed very tangible and tactile, and because we had two other children in the house, we never wanted to have anything that was afraid of breaking,” he continued.

“It feels like we retain the ability to kind of hold her and keep her with us, and if we want to spread her ashes somewhere later in life, we can still do that.”

Social media users took to the comments section to share their thoughts and offer support to the family

The parents then continued to remove Poppy’s rocks, which were all different sizes with yellow dots.

“I think they’re beautiful,” Jake concluded.

Viewers took to the comments section to share their thoughts on Kaylee and Jake’s decision.

One said: ‘What a wonderful way to keep earthly space free for Poppy.’

A second added: ‘What an emotional experience to ‘hold’ Poppy in a new form. The stones are beautiful. I always think of you.’

A third wrote: ‘Whatever option you choose is the right one because it was right for YOU. Sorry for your loss.’

A fourth added: ‘Like a worry stone. Carry with you and rub when you seek comfort. Many worry stones even contain angels. Yours truly contains an angel.”