Remi Bateman was born without a left hand and struggled with simple tasks such as tying her shoes and playing on the monkey bars at school.
In elementary school, she tried to remain positive and used humour to fend off questions by wearing a T-shirt that proclaimed, “Before you ask, it was a shark,” said her mother, Jami Bateman, of Bountiful, Utah.
But Remi, 9, has been bullied of late, and her self-esteem took a hit.
“She started asking for a robotic arm to help her feel more confident, and we decided it was a great idea and should look into it,” said Bateman, 31.
Remi had used prostheses in the past, but they were stiff and didn’t move freely, she said. With them, she still could not do tasks that required fine motor skills, such as using scissors and stringing charms on a necklace.
“They were used as more of a tool,” Bateman said of her daughter’s artificial arms, noting that the family’s health insurance covered the cost.
In the fall, Jami and Josh Bateman took Remi to Denver to meet with a consultant from Open Bionics. The company fits people who have below-elbow limb differences with lightweight, 3D-printed prostheses known as Hero Arms, which function more like a natural arm and hand.
The bionic arms are manufactured in Britain and cost about $24,000, but the Batemans were hopeful that their health insurance company, Select Health, would pay for one for Remi.
Remi said she tried using one of the robotic arms for a few days in Colorado and was thrilled to cut her food with a knife and fork for the first time and carry plates with two hands.
“I loved it so much – I could function like a full human,” she said. “I was able to steal my dad’s hat. When they fit me for my arm, I told them I wanted it to be pink.”
On Oct. 1, the Batemans sent a prescription for the robotic arm and office notes from Remi’s pediatrician to Select Health for approval. One week later, their request was denied, Jami Bateman said.
“They sent us a letter saying it was not medically necessary for Remi to have a Hero Arm and that it was for cosmetic use only,” she said. “We appealed twice and were again denied.”
“It was very upsetting, and Remi cried when I told her, because we’d all been so hopeful,” Bateman added. “It broke our hearts.
When contacted by The Washington Post, a spokesperson for Select Health cited privacy laws and did not follow up on a request for comment about denying Remi’s claim.
In mid-December, a frustrated Jami Bateman tried an approach she’d seen other people use when their health insurance failed them: She started a GoFundMe for her daughter, hoping to purchase a robotic arm through the kindness of strangers. It was a last-ditch effort and one she didn’t embark on lightly, saying that crowdfunding for medical needs is a game of chance and a sad reflection of how broken the American health-care system is.
But she figured she didn’t have much to lose.
Bateman was stunned when friends and strangers chipped in more than $30,000 in just a few days, surpassing the family’s $24,000 goal. People who donated understood the Batemans’ predicament, and many were furious on their behalf.
“The value of that arm is worth more to that company than the happiness of that child,” one person commented on Facebook when Salt Lake City’s KUTV News shared Remi’s story.
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“Let the doctors determine what is medically necessary!!!” another person wrote.
“Everyone was as angry as we were,” Bateman said. “This arm was life-changing for Remi, and the insurance company is telling us it was for cosmetic reasons? People couldn’t believe it.”
“At a video meeting during one of our appeals, I told them, ‘Why don’t you try doing something with one hand and see how it feels?’” she said.
“I wanted to go over there and yell at them,” Remi added. “I was really sad and angry.”
As donations poured in, the Batemans received a call from somebody else who wanted to help.
Andy Schoonover is the CEO of CrowdHealth, a subscriber-based resource that helps people negotiate lower costs for medical bills. He told the family on Dec. 16 that his company wanted to pay the entire cost of Remi’s bionic arm.
“We were looking for some ways to help people during the holiday season, and I stumbled upon Remi’s story on social media,” Schoonover said. “We were honoured to help her out.”
After Schoonover sent a check to Open Bionics for Remi’s prosthetic arm, the Batemans were faced with a decision: What should they do with the money people donated to Remi’s GoFundMe?
Remi quickly came up with an idea.
“She came to me and said, ‘Mom, I know how it feels to have one hand. Is there someone else we can help?” Bateman recalled.
She said she contacted Open Bionics and learned there was a long list of children who had been turned down for Hero Arms by their health insurance companies for the same reason Remi was denied.
“They gave us the stories of several children who needed help, so Remi could choose somebody to give her GoFundMe to,” Bateman said.
While heartwarming to help one child, it also seemed unfair and heartbreaking to leave others behind, but the Batemans understood the reality they were facing: They could pick one or they could pick none.
Remi decided the money should to go to Tyraun “Taj” Johnson, also 9, who was born without a left hand. Tyraun had been selling lemonade in his town of Federalsburg, Md. – which is in Caroline County, near the Delaware state line – to raise funds for his bionic arm, which was also not covered by his health insurance. His mom, Kaitlin Skinner, had also started a GoFundMe account, which had collected about $1,500.
Skinner said she was shocked to learn shortly before Christmas that a girl from Utah wanted to donate her GoFundMe proceeds for Tyraun’s Hero Arm.
“I was so proud of Remi that I immediately started crying,” Skinner said. “She wanted to give my son an opportunity that I was unable to give him. It just touched my heart.”
Skinner said that when her son turned 6, she started noticing that he seemed more insecure about his missing hand.
“He’d act more shy about it when people asked questions,” she said. “He’s normally an energetic, lovable child, and it was starting to affect his confidence.”
Tyraun said he is excited to get fitted for his prosthetic arm in January.
“I’m looking forward to playing sports with my Hero Arm,” he said. “I’m really happy that Remi thought about me.”
His mom said they hope to meet Remi soon and thank her in person.
“We’re both still in shock – her gift has had an enormous emotional impact,” Skinner said. “We’re inspired now to continue with our lemonade journey, so we can donate someday to another child who needs help.”
She and Jami Bateman are fed up at their health insurance companies, which they point out continue to make profits while denying children prostheses that could change their lives.
“What they are doing is horrible and heartbreaking,” Bateman said. “People shouldn’t have to have fundraisers to pay for something this important to a child’s health and well-being. The insurance companies flat-out should have covered it.”
She and her daughter are hoping to raise funds to pay for a third child’s bionic arm.
“There’s another girl named Faith who I’d like to help,” Remi said. “It makes me happy to know she’ll finally get her new arm, too.”