Remembering Lamise ElBetar, former UA student who leaves lasting legacy

Lamise ElBetar loved life and all that it had to offer. Whether it was the hope of opportunity, education or connection, ElBetar herself embodied the good in the world and what it meant to be alive.

But she didn't just love the good parts of life. Those who were close to her remember that she embraced difficulties, including those that came with her "facial difference," as she called it. Friends and loved ones say she turned trials and tribulations into opportunities for growth.

When ElBetar first traveled from Egypt to the Rubber City in 2015 to pursue education at the University of Akron as a Fulbright Scholar , she had no idea how many lives she would touch.

But soon, she would fall in love with Akron and become a popular local figure, inspiring those around her until she passed away Nov. 3 at 41.

ElBetar suffered multiple strokes after undergoing surgery Oct. 30 in Boston to help with her venous malformation condition. She later lost brain activity, said her long-time friend, Toqa Hassan.

The question that shaped ElBetar's life was, "'How can I use my difference to embrace people and create community and spread love?'" Hassan remembered. The two met while they were both students at UA in 2015, and Hassan's family took her in.

Due to visa rejections for her immediate family, she will be buried in California with other relatives.

ElBetar is survived by her mother, Hekmat Elsayed Abdrabo Arafa, her twin sister, Lobna Said Abdelrazel Ibrahim ElBetar and her younger brother, Mohamed Said Abdelrazel Ibrahim ElBetar, and his family. She is preceded in death by her father, Said Abdelrazel Ibrahim ElBetar.

Her family said they want her to be remembered as optimistic, joyful, proactive and courageous – someone who was firm in what she believed and unafraid to say it loudly.

Her brother Mohamed said she "brightened any place with her soul."

"She was ambitious, joyful and loved to give," her sister said.

An Aza, a condolence gathering, was held for ElBetar Nov. 5 at the Islamic Society of Akron & Kent. One of her friends started a GoFundMe to help cover funeral expenses, burial services and medical expenses.

Her friends in Akron are in the initial stages of planning a memorial celebration in the city.

"There's no more purer heart than hers," said ElBetar's boss, Dave Ewonce. "You look at all the adversities she had to deal with her whole life, and every time you talk to her, it was like she won the damn lottery."

Lamise ElBetar's journey from Egypt to Akron

ElBetar came from Cairo, Egypt, to Akron in 2015 to pursue her Master of Business Administration at UA. She arrived with a cohort of other students from Egypt, Hassan said, and later earned a second graduate degree at the university in supply chain management.

ElBetar was born with a condition called a venous malformation, described by doctors as a "jungle" of intertwined veins and muscle. It was about the size of a pimple at birth but has continued to grow all her life and caused the lower right side of her face and the majority of her lips to protrude.

She made such an impact on those around her at the University of Akron that a group of university and community members started Team Lamise to help fund treatment for her condition, which she had previously thought wasn't possible.

At one point, in 2020, she was scheduled to leave the country at the end of the year, as time on her visa was running out, and she could not fund a full-time job during the COVID-19 pandemic.

But after a Beacon Journal article went viral across the country and internationally, ElBetar received at least three potential job offers in the days before she was scheduled to leave, and she was able to stay.

"This community is amazing," ElBetar told the Beacon Journal on Jan. 1, 2021, her 36th birthday. "A story was published like this and in a matter of two to three days, it changed my destiny. This was beyond my imagination."Former Beacon Journal medical writer and consumer columnist Betty Lin-Fisher wrote a series of stories following ElBetar for several years as she navigated treatment and life in Akron.

"I am so honored that Lamise first trusted me in 2018 when I asked if she would be willing to let me write about what she called her 'facial difference' and her inspiring story," said Lin-Fisher, who now works as a national consumer reporter for USA TODAY. "She and I had no idea it would lead to so many stories in the Beacon Journal over the years. She was always so touched that so many in our Akron community were inspired by her ongoing journey.

"There are some people we meet as journalists who are extra special. Lamise was that for me, and I'm so saddened that we've lost a bright light in our world."

ElBetar's new role lasted for about 10 months, until she was laid off for budget reasons . Later, in 2023, she said goodbye to Akron before returning to Egypt to comply with her visa requirements, which required her to live outside the U.S. for one more year before she could apply for and return on another visa.

She later returned and stayed in the city, working for Ewonce. She was recently promoted to director of marketing for BE Solutions , a health benefits consultation company.

She and Ewonce grew close after meeting at a fundraiser. He originally hired her because she needed health care so she could get treatment, and she became an integral part of his company.

He was the one who sponsored her visa to bring her back to Akron. Ewonce said she loved the United States, and he was more than happy to help get her back here.

"The proudest thing I was ever gonna do was make her American," he said.

'Face people and be brave.' ElBetar didn't let her 'facial difference' stop her

ElBetar told the Beacon Journal in 2023 that she was against a very dangerous facial transplant because she knows she is beautiful.

"If someone is out there is staying at home and don't want to leave their home because they look different or they have a disability or because of anything like obesity or looking different, I wanted them to hear my story and I want them to leave their homes and I wanted them to pursue their life and not just think I don't want to face people," ElBetar said in 2020 . "No. Face people and be brave."

Tim Gill, a reader who was inspired by ElBetar's story, started a community fundraiser for her in 2019 and grew close with her through the last decade. He remembers her as beautiful, inside and out. She was open about her "facial difference," he said.

"If somebody was staring at her, she would actually walk up to the person and say, 'Can I answer any of your questions?'" Gill said. "Not too many people do that."

"She never let the way she looked define her or put her in a different place or set her back," Hassan said.

A love for Akron and helping others

ElBetar's life was dedicated to helping others, Hassan said.

Her first job in Egypt involved working with people in wheelchairs. In the U.S., she spearheaded multiple local and national projects through the Muslim American Society . She helped Akron Mayor Shammas Malik campaign during his mayoral run. She led projects at the Akron Masjid .

Most recently, she got involved with an organization called myFace and had planned to go out into communities with children with facial differences and given them the confidence to overcome any self-consciousness, Hassan said.

"That was her spirit. She was so full of life," she said. "She was optimistic, and she was happy and involved, and she never wanted anybody to feel down."

She loved the city of Akron, Hassan said. She enjoyed frequenting the Peanut Shoppe and Chill Artisan Ice Cream. She loved how accessible nature is in the city.

"She had so many people in Akron that were behind her that she considered family," Gill said. "Everywhere she went, people knew who she was and wanted to talk to her."

One of these people was Sue Tully, a retired UA employee who joined Team Lamise and remained close friends with her for years.

"Classic, beautiful, smart Lemise," she remembered of her friend.

Hassan said she wants people to learn from ElBetar's story not to let our differences separate us.

"I think we all have to put our differences aside and really love one another and love the world and be excited about what new opportunities or what new things come from talking to the next person," she said.

ElBetar told Lin-Fisher in 2023 that she believed the most important part of her journey happened after she began to share her story.

"Thank you from the bottom of my heart," she said. "Akron will always have a special place in my heart as my second home!"

This article originally appeared on Akron Beacon Journal: Remembering Lamise ElBetar, former UA student who leaves lasting legacy