Deb Owens had noticed Lamise ElBetar, who at the time in 2017 was finishing her MBA at the University of Akron.
“Human nature is you couldn’t but notice what she likes to call her ‘facial difference.’ You just couldn’t help it,” said Owens, an associate professor of marketing and current interim department chair.
Lamise was born with a venous malformation, a mass of intertwined veins and muscle that has been growing all her life and now causes the lower right side of her face and the majority of her lips to protrude.
“My heart went out to her, but how do you walk up to her and say, ‘Hey, do you want me to get you some help to fix your face?”
In the United States, where there are so many medical advances, there must be something that can be done to help Lamise, a young woman from Egypt, thought Owens. She has worked in the medical field as a systems engineer and is married to a Summa Health surgeon.
Lamise told her she would love some help, explaining what avenues she and her family had pursued before giving up hope.
But it wasn’t just Owens whose heart was being tugged to help Lamise.
A group of UA marketing professors and staffers, including associate professor Bill Hauser and Myra Weakland, assistant director of the graduate programs in business, worked with then-UA President Matthew Wilson and other departments to secure a one-year scholarship and housing for Lamise to return to UA in the spring of this year to pursue another master’s degree. They also began consulting with local doctors.
Meanwhile, efforts to help Lamise also were underway by members of the university’s Muslim community and Lamise’s “adopted” local family, Nasser Razek, assistant professor of instruction in the college of education and his wife, Ghada Awad, who is finishing her Ph.D. in education. They had been helping Lamise explore some medical possibilities, but had come up empty.
Once the two groups joined together — while Lamise was back in Egypt in the summer of 2017 between her degrees — they formed Team Lamise.
That team is now made up of about 14 people trying to raise money through a GoFundMe account (www.tinyurl.com/TeamLamise) and forming a network of friends and colleagues in Akron and Boston, where doctors have agreed to treat Lamise. Specialists in Boston will use a technique called sclerotherapy, a series of injections that will help to reduce the venous malformation. Her first treatment is scheduled for January.
Medical costs for Lamise could add up to several hundreds of thousands of dollars and Team Lamise knows it’s possible they won’t be able to cover all costs. Each treatment could cost up to $65,000 and it is unknown what Lamise’s limited medical insurance for international graduate students will cover.
Doctors in Boston have told Lamise it will take two months to see whether the first treatment in January works. If they decide to proceed, she could need treatments every few months for two to five years and possibly throughout her life.
Another large unknown is Lamise’s ability to stay in the U.S while she seeks treatment. Her scholarship and housing offer through UA was for one year with a possibility of additional funding for the second year. That ends in December. Lamise also works as a student assistant for minimum wage. (Her first MBA was funded by a U.S. Aid Step program, a U.S. federal program for Egyptian women to get MBAs).
Team Lamise is hoping to secure additional scholarship funding for Lamise to take two more classes and finish her master’s degree in the spring. They also are working on a potential internship/co-op opportunity in her field, which would allow her to stay an additional one to three years after earning her degree — and allow her to pursue the medical treatments.
Without scholarship support and help with medical costs, Lamise said her family can’t afford for her to stay in the United States. Her father died when she was 19 and her mother, twin sister and younger brother still live in Egypt.
Her younger brother has arrived temporarily from Egypt to meet Lamise in Boston, where they will stay for a month during the UA holiday break while she has appointments and her first treatment.
If she can no longer stay in student housing next semester, community members have offered to let Lamise stay with them. Several members of Team Lamise and others have been personally paying for some expenses for Lamise.
“We are in it for the long run and it will all be moot if Lamise has to return home,” Hauser said.
Weakland often reminds Team Lamise to take it “one step at a time.” She’s seen the community rally to help strangers before, and she’s been touched by the funds already being donated to assist Lamise.
“Lamise could have to return home if we do not work things out. I am optimistic and think things will work out,” she said.
The venous malformation has begun to threaten Lamise’s eyesight and her mouth. Because there are so many arteries from the malformation intermingle in her face, the chance of extreme blood loss is high for any type of surgery and even dental work. She hasn’t had a dentist willing to look at her teeth for years. She chews on the opposite side.
Team Lamise consulted with Dr. Ananth Murthy, Akron Children’s Hospital director of pediatric plastic and reconstructive surgery. After determining a surgery was too complicated with risk of extreme blood loss, he referred Lamise to specialists at Boston Children’s Hospital.
Lamise’s case is the most extensive venous malformation that Murthy said he’s seen. Her skull has thinned and the blood vessels are intertwined in the skull, muscle, skin and salivary glands, making the removal of the malformation unsafe.
Murthy said he could see the venous malformation perhaps being reduced by 50 percent over time with treatments, but the challenge is it continues to grow.
It is hard to say whether Lamise’s condition could have slowed or been eliminated if she had been treated as a child, though in general, vascular malformations are better handled early, he said.
Lamise’s family did seek medical advice when she was a young child, but was told to wait until she was a teen. She had a surgery in France in her teens to reduce the condition, but it returned.
Murthy said it’s tough to say whether the condition is life-threatening but it could affect her vision, hearing and breathing. Patients with the condition also are at risk for blood clots with inflammation.
“What can you do that doesn’t risk her life, makes it better, that we can afford that will increase her life and her life expectancy as well as her ability to function to live — to eat and chew and see?” Owens said. “This isn’t cosmetic surgery. This isn’t a nose job.”
No face transplant
Initial thoughts were of a facial transplant, but doctors said it would be life-threatening, disfiguring or paralyzing.
Lamise was against it.
“My whole life I have looked seeing this and I’m kind of accustomed to it,” she said. “On my bad days, I might see it, but normally I don’t.
“I see myself as a beautiful lady.”
“I like my smile and I like the shape of my eyes when I’m smiling. It feels like I’m smiling with all of my face. I don’t want to ruin it.”
Her lips, which have been growing larger in recent years, are what bother her the most.
“What irritates me? It’s people looking at my lips when I’m talking. I want people to look at my face, not my lips.”
Team Lamise has so far raised more than $17,000 of the $65,000 goal to her GoFundMe, coordinated by Global Ties Akron.
The team transcends religion and politics.
“We’re not talking about any religions here. We’re talking about people,” said Ghada Awad, Lamise’s local “mom.” “This is how religion teaches us, whether its Moses or Jesus or Mohammed: All of them were kind, compassionate, very considerate characters.”
Said Owens, a former state school board member and a conservative Christian: “People stereotype conservative Christians that you wouldn’t want to help a Muslim. That can’t be further from the truth.
“Put a mask on that looks like her. Walk around and then you decide who is deserving this type of specialized attention. It’s because of her attitude that people are so willing to help her. She never came here seeking medical attention.”
Hauser is not surprised people in Akron have rallied.
“To get the community to come together and help this awesome young lady from another country and another religion, is my sincerest hope. It says great things about us, both as Americans and, especially, Akronites,” he said.
Said Lamise: “Team Lamise dreamed for me ... I didn’t have a dream to do anything with my face.
“My mom says: ‘This is my great prayer for you. This is literally a blessing from God. These people helped you because God made them love you.’ ”
Betty Lin-Fisher can be reached at 330-996-3724 or email@example.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.ohio.com/betty.