Facebook followers of “Addilyn’s Journey of Hope” on Wednesday read a post on the page they’d been praying wouldn’t come this soon: “Addilyn Sophia Davis earned her angel wings at 8:23 this morning.”

Addilyn was 4 years old when she died Wednesday morning, two years longer than most infants with the fatal degenerative disorder Krabbe disease are expected to live.

A Facebook page chronicled Addilyn Davis’ struggle with Krabbe disease. Facebook image

Jamie Davis, of New Sharon, clears the mouth of her daughter, Addilyn, before attending a hearing in April on a bill that would have put screening for Krabbe disease and similar disorders on the list of what’s tested for in newborns in the state. Addilyn died Wednesday morning. Staff file photo by Andy Molloy

Since 2013, Addilyn’s mother, Jamie Davis, of New Sharon, has documented the journey of her daughter and her family on Facebook as they’ve grappled with her illness. In the two years the page has been active, it has grown to include 116,513 followers.

Davis also fought for awareness of the disorder and others like it, including pushing for legislation this year to add Krabbe disease and similar disorders to the list that are screened for at birth under Maine law. The bill didn’t pass because there hasn’t been enough research yet on the disorder, said Rep. Andy Buckland of Farmington, one of its sponsors.

“As a legislator I’m sitting here and wishing I could do more,” Buckland said Wednesday. “With our knowledge as humans, we still have technical challenges that confound us, even in these days of advanced medical research.”

The Davis family, which also includes Addilyn’s father, Kyle, and younger sister Rylin, asked on the page Wednesday for “space” before speaking publicly.

As part of the push for awareness and action, Davis had posted daily updates on Addilyn’s struggle.

The posts fluctuated depending on the day. Some days they were frantic, the voice of a mother watching her child suffer. “She’s not well. High heart rate, high fever, high respiratory rate … Please, I beg you to pray for her comfort,” Davis wrote on Oct. 16.

But there were also posts such as the one Davis wrote Monday, posts that depicted a mother in awe of her child.

“Her strength, resilience and beauty radiates and never ceases to amaze me. She is a gift, a blessing and a miracle. This journey is hard; her fight remains harder. She’s peaceful, she’s content, she’s happy and she’s loved,” Davis wrote late Monday night, 36 hours before her daughter would succumb to the struggle she had been fighting since birth.

A RELATIVELY RARE DISEASE

Krabbe disease is a relatively rare disease, affecting one in 100,000 babies. It attacks the myelin sheath of the nervous system. It’s accompanied by severe symptoms such as nerve pain, muscle spasticity and inflammation. Children who are born with the genetic disorder live an average of two years.

Last April, support for Addilyn and the Davis family spread outside of the Facebook world and into the Maine State House, when the bill to add screening for Krabbe disease and other lysomal storage disorders to the list of diseases that are screened for at birth under Maine law was brought before the Joint Standing Committee on Health and Human Services.

About 75 supporters of the bill, including Jamie and Kyle Davis, packed the hearing room.

The couple told the committee about their experiences raising a child with Krabbe disease, including their devastation when the condition was explained to them.

“So we asked one more question: ‘How do we treat it?’ We got one more answer: ‘You can’t. It’s fatal,’ ” said Kyle Davis, taking a moment to compose himself before continuing his testimony at April’s hearing.

Former Rep. Lance Harvell, who represented Farmington and Industry, said in his testimony that one of the struggles that parents of children with the disease go through is that the symptoms look like those of a baby born of a drug-addicted mother.

“My sense was that what most upset (Jamie Davis) is that a doctor is assuming what he is looking at is a cocaine baby,” Harvell told the committee.

Harvell told the committee that Jamie Davis’ passion for the cause drew him in.

“She said normally mothers, when they have daughters, they are planning for their weddings and their children. And she said, ‘I’ve been planning for a funeral her whole life,’ ” Harvell said.

Related Stories