Facebook followers of “Addilyn’s Journey of Hope” read a post on the page Wednesday they’ve 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.

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 group has been active, it has grown to include 116,513 followers.

Davis also fought for awareness of the disorder and those 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 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.

‘PLANNING FOR HER FUNERAL’

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 they were told the condition was fatal.

“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 while waiting for doctors to diagnose the rare disease, the symptoms look like those of a baby born of a drug-addicted mother.

“My sense was that what most upset her is that a doctor is assuming what he is looking at is a cocaine baby,” Harvell told the committee. “Jamie’s a young woman, and this is in all likelihood what a doctor has far more seen. She’s trying to tell that doctor that ‘I’m not a drug addict,’ and that doctor is thinking, ‘People lie about drugs. That’s what I’m looking at.'”

Harvell told the committee 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.

In May the bill was recommended “ought not to pass.” It was introduced by Sen. Ann Haskell, of Cumberland, and co-sponsored by Buckland, Rep. Catherine M. Nadeau, of Winslow, and Rep. Erin D. Herbig, of Belfast.

Buckland said Wednesday that the primary reason the bill didn’t pass was because the proposed legislation was one step ahead of the science.

Because of the complexity and the rarity of the disease, screening for its presence in newborns is not yet up to the precision that the Maine Center for Disease Control requires to screen for disease. Buckland said since screening is still at research level, the Health and Human Services Committee was reluctant to add it to the scientifically sound mandatory screening list.

After the bill failed, Buckland wrote a letter in which he acknowledged the Davis family for their strength in caring for their daughter and their effort in bringing awareness to Krabbe disease.

“This family is an amazingly strong family with huge amounts of integrity and fortitude. They have worked tirelessly not only to care for their daughter, but they’ve worked tirelessly to bring awareness of this disease in (their) efforts to get mandatory screening and I have a huge respect for them,” Buckland said.

‘BECAUSE OF THIS PRECIOUS ANGEL’

The post alerting followers about Addilyn’s death drew 15,300 comments as of Wednesday evening. Posters wrote of how they felt as though they knew Addilyn and the Davis family personally.

“We have come to love Addilyn through posts from your heart,” wrote Deanna Oliver, of Bangor. “I thank you for allowing us to know her and her strength. For teaching us about this horrible disease. May you take a tiny bit of comfort in knowing that there are sooo many people out here with broken hearts who followed her life and learned to never take life for granted and love every moment not knowing what is around the corner of life — because of this precious Angel.”

In the Facebook post Wednesday, the family asked for “space” but said that they will let followers know when a memorial service is scheduled.

The support that the Davises received through the page was accompanied by a sweeping awareness of her rare disease.

“She has touched so many, and with the awareness, I’m sure, will save several lives,” wrote Kristy Finely Labonte. “We will hold you up with love and prayers.”

The support that “Addilyn’s Journey for Hope” has generated was not lost on Buckland, who said Addilyn’s struggle has brought Krabbe to such a heightened level of awareness, it will only further encourage researchers to keep trying to perfect the science behind screenings and maybe even develop treatment.

“She has done so much for the awareness of the disease, and that awareness influences the (research) aspect,” Buckland said. “Those Facebook likes, those are from all over the world.”

Lauren Abbate — 861-9252

[email protected]

Twitter: @Lauren_M_Abbate

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