A family is devastated after a young girl was taken too soon.
We first introduced you to Crimson Barnett in February. The then 4-year-old was fighting for her life after being diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) an inoperable brain tumor. She died at home in hospice care May 6.
Her family was trying to fill her final days with happiness, instead of putting her through radiation treatments which would only prolong her life and would likely impact the quality.
DIPG has no warning signs and shuts the body down. There have been no advancements in treatment of the tumor in decades. Crimson’s family hopes her story will raise awareness and funding.
“Her fingerprints. It would be so hard to move from this place because her fingerprints are all over this house, and it would be so hard to leave that,” Ron Huffman, Crimson’s grandfather said.
“Everyone that’s ever met her said she lit up a room. She was just like a light,” Larissa Barnett her mom said.
Crimson, who was 5-years-old when she died had been shining brightly and beating the odds since birth. She was diagnosed with autism as a baby. Her parents said doctors told them she’d never talk and they’d never hear her say ‘I love you.’
“You’ll never hear those words is what they told me and then just last year she started talking and we actually got to hear her say those words all the time,” Barnett said.
Then in November the family received the devastating diagnosis. Less than one percent of people diagnosed with DIPG live more than five years. Most die within months.
“As they progress everything starts shutting down. Their ability to see, their ability to smell, their ability to speak, their ability to eat,” Huffman said.
Crimson’s family said it was a rapid decline.
“This by far, this is by far the worst pain I’ve ever felt in my entire life,” Huffman said.
Her family is now hoping to turn their pain into a platform.
“May 17 is DIPG awareness day in 20 states. It’s the law, every year it’s going to be celebrated. It’s not in California,” Huffman said.
The family is hopeful a designation would lead to more funding and research. Her parent’s also choose to donate the tumor.
“Because we’re hoping it’ll help find research, and study it and hopefully help find, if not a cure, some better treatment options at least,” Barnett said.
Crimson’s celebration of life is on DIPG awareness day May 17. The public is welcomed.
The Well Community Church
Fig Garden Campus
4545 N Palm Ave, Fresno
from 5:00 p.m to 7:30 p.m.