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'This final journey.' 5-year-old Raleigh girl with inoperable brain tumor dies.

The last Mother’s Day for Avery Neill

Five-year-old Avery Ann Neill was diagnosed in December with an inoperable DIPG brain tumor. She died at home on Mother's Day in the arms of her family in Raleigh.
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Five-year-old Avery Ann Neill was diagnosed in December with an inoperable DIPG brain tumor. She died at home on Mother's Day in the arms of her family in Raleigh.

Avery Ann Neill, a 5-year-old girl who was diagnosed in December with an inoperable brain tumor, died Sunday at her North Raleigh home.

The News & Observer has been documenting Avery and her family for months as they navigated medical options and tried to make every day count. A story was published online last week about Avery's mother, Emily Neill, preparing to spend her last Mother's Day with Avery.

Emily and her husband, Andy Neill, have two other children: Bekah, who is Avery's twin sister, and 3-year-old James.

On Sunday night, a family member wrote the following post: “Thank you to everyone for your support and concern for Avery and her family. They will need your prayers now more than ever. Avery went to be with Jesus at 5:15 p.m. this evening, surrounded by family and close friends. Bekah and James were able to give her hugs and kisses, and Bekah helped give her a bath, chose Avery’s favorite towel and pajamas, brushed her hair, and helped prepare Avery for this final journey.

"We are taking time as a family to process this immense loss and grieve together. Please be patient with us as we circle around the Neills so we can try to be as strong for them as they have been for Avery.”

Avery had diffuse intrinsic pontine glioma, commonly called DIPG. About 300 children are diagnosed each year, most between the ages of 5 and 10, when dramatic brain development takes place.

The tumors, which have no known environmental or genetic cause, carry a bleak prognosis: Children with the disease typically live nine to 12 months after they are diagnosed. Avery died five months after her diagnosis.

The congregation of Bay Leaf Baptist Church gathered for a special 'Night of Encouragement' for the Neill family, four months into their journey of treating their five-year-old Avery's inoperable brain stem tumor, known as DIPG.

Since Avery’s diagnosis, Emily Neill, a neonatal intensive care nurse, has written about Avery's journey. A Facebook group, Bravery for Avery, has more than 50,000 members.

The Neill family recently received a diagnosis for their five-year-old daughter Avery that has changed the course of their lives. Avery's twin sister Rebekah and their little brother James struggle to understand the 'boo boo' in Avery's head.

On Friday afternoon, Emily posted that Avery’s tumor had begun to progress, and her condition quickly worsened over the weekend.

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