“We turned her ashes into stone”: the story of the parents of the 15-month-old girl who died due to a rare disease

A stone made with the ashes of their 15-month-old daughter who died due to a serious and rare genetic disease

A 15 month old baby girl she died due to a rare genetic disease and her parents decided to tell her story on the web. In a short time she went around the world.

Kaylee and Jake I'm a devastated mum and dad who had to say goodbye to their 15 month old daughter. They found the strength to tell her story and reveal their decision. They used the little girl's ashes for create a stone that they can always carry with them and touch with their own hands.

It all started after the doctors diagnosed him at just 9 months of age. The little girl was suffering from TBCD. It's about a genetic neurological disease. The parents themselves had decided to have her examined, as they had realized that something was wrong with Poppy. She couldn't see well. Here is their story:

After doing the most advanced genetic testing on the market, we discovered the genetic disorder and I believe at that time she was the 38th child to ever receive that diagnosis. We were told that life expectancy was 3 to 5 years. We thought we would have more time, but then everything fell apart quickly.

The 15 month old baby girl started having breathing problems a few days after the heartbreaking diagnosis. Doctors later discovered that she had contracted a serious infection. A few days later, his little heart stopped forever.

@poppy_and_kaylee Quick answer- her body went from small spots of pneumonia to only one of her lungs having maybe 25% function. Her seizures were so frequent and almost impossible to control. Leukodystrophys cause the body to not function like a healthy body. Her muscles, organs, and brain could n't recover or heal. #leukodystrophy #leukodystrophyawareness #tbcd #tbcdawareness ♬ original sound – Poppy&Kaylee

They decided they wanted to have something in memory of him and so they chose the transformation of ashes into stone. Poppy is now always with them and they can touch her:

I just want to make it clear that when you sit at the funeral home and listen to the various options available, they all sound terrible. This option seemed the least worse and gives us the impression that we can keep it with us.