Outpouring of Support For Family of Addie Grace Bolt, A Baby With Krabbe Disease Who Just Passed Away

December 17, 2015 Updated: December 17, 2015
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People from around the world expressed their condolences and offered prayers for the family of Addie Grace Bolt, an infant diagnosed with Krabbe disease. She died peacefully in her sleep on Thursday morning, her parents wrote.

Addie, who was diagnosed with the disease at 3 months of age, was “all smiles and unfortunately the disease just takes that,” her grandmother, Tammy Maddox, told WSPA in South Carolina.

Stephanie and Jonathan Bolt, Addie’s parents, wrote on Facebook it “is an unbelievable honor to be given such a precious gift,” and he thanked supporters for their prayers and support.

Around two months ago, the Clemson University community in South Carolina, held a rally for the child.

Krabbe disease is an inherited disorder that destroys the myelin, or protective coating, on nerve cells in the brain and throughout the central nervous system. The disease is rare, affecting approximately 1 in 100,000 people in the United States.

“In most cases, signs and symptoms of Krabbe disease develop in babies before 6 months of age, and the disease usually results in death by age 2. When it develops in older children and adults, the course of the disease can vary greatly,” says the Mayo Clinic.

“There’s no cure for Krabbe disease, and treatment focuses on supportive care.”

According to WYFF-4 TV, Addie, who was born in December 2014, was unable to breathe, eat, or hold up her head by herself.

On Facebook, there was a large outpouring of support for the family of the child.

“Please pray for the family of Addie Grace. She passed away this morning. She was the baby that had krabbe disease. She was only a year old,” wrote one person.

Added another, “So sad. Another baby lost to the horrible disease of Krabbe.”

A GoFundMe page was set up for Addie’s family a few months ago to help pay for medical bills and other costs.