BETHEL — “Hailey’s mission is my mission,” said Tabaitha Steward, who was awarded Thursday with the Spirit of America Award in South Paris by the Oxford County Board of Commissioners.

Steward’s daughter, Hailey was diagnosed with leukemia at age 5 and passed away on September 23, 2017 at age 10. The fundraising was Hailey’s idea and when she was eight Team Hailey Hugs became a non-profit. “Hailey’s favorite saying was ‘we are all family’ and she was adamant that we help other families,” said her mother.

Telstar student, Selina O’Hara, who was Hailey’s best friend, came to the Commissioners’ ceremony with her mother, Julie Warren. “It felt fitting to have them with me for something like this,” said Steward. Her husband, John, would have come too, but is in Florida caring for his mother post-surgery. They have a son, Jared, who is 20 and works at the Gem Theatre.

“It’s hard, she was a child. Moms and Dads are supposed to pass away way before their kids. To see her before cancer and everything she went through during cancer and up until she passed away really puts an emotional toll on a parent … All I ever wanted, even when she was here, was to be grateful. if we’re not doing good than what are we here for?” asked Steward.

At their first event, they raised $12,000 and bought a refrigerator for every room at The Barbara Bush Children’s Hospital at Maine Medical Center in Portland, where Hailey was a patient. They have been able to help 225 families since becoming a non-profit and all but 17 were Maine families.

The first thing they do for newly diagnosed patients is introduce themselves then send them a $500 check to help with expenses. “Anything I can possibly do for these families, I do,”  said Steward. She offers moral support and guidance. She’s taken children and their families to appointments, and picked up families in New York and Boston. Her team has paid to fix families’ cars, has paid their mortgage or rent, and distributed gas cards.

Normally they pay directly to the utility or wherever the money is owed. They share information with families about other organizations that may be able to help them, too. Says Steward, “And I get to meet amazing kids, it doesn’t get any better than that.”

They don’t ask people where they are on the financial spectrum, as do other non-profits. Recalling her own decision to quit her job at the post office to care for Hailey full time, Steward said, “If you’ve got a child fighting cancer, it doesn’t matter how much money you’ve made in the past, this will affect your income from the date of diagnosis until even after remission. It’s definitely hard on them.”

They recently had a family in Bangor whose daughter is terminal and the parents can’t work. They owed the oil company. “We paid $500  and I got the oil company to donate $100.” said Steward.

If a child passes away, they donate $1,000 to help with funeral expenses.

Steward’s board of directors, that she calls “amazing”  are her husband, John, Missy Wakefield, Lloyd Sweetser, Stephanie Jackson, Mike and Wanda Worthly, Tom Sapp, and Becca Tuttle.

Board member and treasurer, Catherine Flemmings, has helped them secure grants. Steward was thrilled when they recently received a grant from the Maine Cancer Foundation after trying for many years. They receive money from private donors and from events, too. This month they raised $1,000 from returnable bottles and cans they collected at the shed at the Bethel landfill. “That’s two families that we can help,” says Steward.

The board members used to do their work from their individual homes and found they needed to consolidate, so now lease a very small space on Main Street in Bethel.

This year they worked with the state legislature to get two bills passed. The first was to give Maine it’s own Childhood Cancer Awareness month in March. The month celebrated nationally is in September. Second, a new check-off box on State of Maine income tax forms allows taxpayers to make a tax deductible donation to research facilities in Maine that do childhood cancer research.

“Hailey loved to joke with people,” said Steward. While she loved Tom Brady, her doctor was a Philadelphia Eagles fan. One Thanksgiving, she wrote a sign on her hospital room door, “Napping. Do not enter and this means you, Dr. Weiss. Dreaming of Tom Brady and drumsticks.”

Another time she got all the other kids to wear ring pops when they were going into the clinic. She used to tell Dr. Weiss, “the only ring the Eagles would ever win was a ring pop.” The February following Hailey’s death the Eagles beat the Patriots in the Super Bowl, something Steward considers prophetic.

“My town of Bethel … they were her force. One year she wanted to buy pajamas for the hospital. We ended up with 500 pairs of pajamas.” So many, they gave them to three hospitals.

“Because of how strong she was, she brought this out in all of us,” says Steward.

 

 

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Artist, wife, mother to many, Arlene MacKillop, holds the cane