Correspondent photos / Amanda C. Davis Kelly Long and twin daughters, Kamryn, left, and Reygan look at a CAT scan image showing Reygan's brain shortly after birth. Long said doctors told her a third of Reygan's brain was missing and that she would be a "vegetable."

CANFIELD -- Kelly Long has had her share of heartache, disappointment and loss over the years, but she said each obstacle has strengthened her resolve to overcome and her instinct to keep fighting.

Long's story may seem hard to fathom, but she insists she remains positive, and that each challenge she's faced has prepared her for the next.

"I really think things could be so much worse," she said. "I'm grateful for everything that's turned out my way."

Long, 46, faced medical challenges as a teen, infertility during her child-bearing years, an autism diagnosis for her twin daughters, the death of a spouse, a scary delivery for her son and a life-threatening condition that almost claimed her life.

What keeps her going, she said, is knowing her children need her.

"You've just got to suck it up and keep going," she said.

Long, a 1995 Beaver Local High School graduate, went through fertility treatments and said she was overjoyed when she learned she was pregnant.

Her daughters, Kamryn and Reygan, 22, were born three months early and were considered micro preemies, both a little over 2 pounds. They spent months in the hospital, with Kamryn suffering a stroke at two weeks old and Reygan undergoing multiple brain surgeries.

While she was pregnant, Long said, a high-risk doctor told her and her husband, Bill, that Reygan was missing a third of her brain. At that point, Kamryn looked healthy, Long said, but doctors suggested she end the pregnancy because Reygan would be "a vegetable and a burden."

Long said moving ahead with the pregnancy was "the best decision I ever made."

An autism diagnosis for Kamryn came at age 2, and Reygan received the same diagnosis at 10. The girls went through years of physical, occupational and speech therapy, and Long said the family moved to Canfield when the girls were in second grade because of the district's special education program.

The twins, who were not expected to walk or talk, thrived, and are active in cheerleading, gymnastics, track, volleyball, swimming and weightlifting.

Long said Reygan became nonverbal after her father, Bill, died on Valentine's Day in 2014, but rebounded with the help of a service dog named Crosby.

"We trained him for her needs," Long said. "He helped her to talk again."

Kamryn plays the banjo and performed in front of 10,000 people last year with country artist Chris Higbee at the Firestone Farms Fourth of July celebration in Columbiana.

"We played 'Dueling Banjos,'" Kamryn said, explaining she doesn't get stage fright. "(Playing) helps with my anxiety."

In September, she will play the banjo during a talent show at the Johnny Appleseed Festival in Lisbon.

Long went into labor a few weeks early with her son, Liam, 13, during a blizzard and was flown to Pittsburgh for treatment.

He had a few seizures and was diagnosed with epilepsy at 11 but eventually came off medication and hasn't had an issue since, Long said.

He will be in eighth grade this year at Canfield Middle School, where the girls graduated from in 2020, the same year Long was diagnosed with kidney disease. The disease progressed to end-stage kidney failure and she was on dialysis three days a week for four hours at a time.

Long said her kidney issues developed after a Type 1 diabetes diagnosis at age 12. She admits she "let it slide" over the years as the girls' medical needs took precedence.

As her condition worsened, Long said she began to make plans for who would care for the children if she died.

Long, who had previously worked in the mental health field, said she had 12% kidney function when the Cleveland Clinic called last year on Memorial Day to tell her a donor had been found.

"I didn't have a lot of time left," she added.

She received a life-saving transplant later that day, after being told months earlier that finding a match could take years because she has Von Willebrand disease Type 2B. The bleeding disorder has been in her family for generations, and all three kids inherited it.

She estimates she's had hundreds of blood transfusions over the years, saying, "I have to get a blood transfusion just to get my teeth cleaned."

She had a setback in early March and doctors thought she might be in rejection, but found the kidney was inflamed, so they upped her anti-rejection medication. She takes 46 pills everyday.

"I feel a hundred times better than I did," Long said, explaining each day gets better. "I think I got used to feeling horrible."

In June, Long received a card in the mail from her donor's mother, April. All she knows is that her donor's name is Avery, he was 17 and he died of a cardiac event.

She wrote April a letter but hasn't heard back yet, and said a transplant coordinator at the clinic told her Avery's mother would eventually like to meet Long.

"I definitely want to meet April," she said. "I think I need to meet April."

Cellular memory is a phenomenon that occurs when transplant recipients take on characteristics of their donors.

Long said mashed potatoes and gravy was her favorite meal, prior to transplant. Now, she doesn't like it at all, but craves bread, which she never did before. Recently, she found herself with intense cravings for cornbread and suspects she inherited some of Avery's tastes for food. She said it will be one of her first questions when she and April connect again.

Long said her parents, Steve and Vicky McConnachie, of West Point, taught her how to be strong and have been there when she's needed them most.

After Long's transplant, her parents took all three kids on a two-week road trip out West, to give her time to heal.

"I've learned that I've got to get up and go whether I want to or not," she said. "(The girls) still expect me to be mom."

In the past, Long has been active with the Autism Society of Mahoning Valley and is a founding member of Walnut Grove, an all-inclusive, special needs playground in Canfield.

Dana Winters, who owns Miss Dana's Diamonds in Boardman, said her all-abilities gym brought her and the Longs together.

When she first met the girls, Winters said they could barely hold themselves up, physically. Now, they're working on back handsprings and the more technical aspects of gymnastics.

She said Long is "like a big sister" and is the driving force behind the girls' success.

"She is a super star ... she's just incredible," Winters said of Long. "She always pushes them to do their best."

Despite her tough road, Long said she remains positive but can't help to wonder what's coming next.

"I'm in survival mode always," she said.

Survivor's guilt has also set in for Long, but even on her hardest days, she said she pushes herself -- for her family and her donor.

"I do it for him, for Avery, because he's not here to do it," she said. "I want his life to have a purpose and a meaning."

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