Lamise ElBetar, the University of Akron graduate student who has been undergoing treatments to try to reduce her venous malformation, heads to Boston this week for her third treatment.
Doctors at Boston Children’s Hospital have been treating ElBetar, 34, since January to try to reduce what she calls her “facial difference.”
Lamise (pronounced Lah-meese) has been the subject of Beacon Journal stories about her journey and the community support she's received to help her navigate her medical difficulties.
Lamise was born with the venous malformation, a mass of intertwined veins and muscle that causes the lower right side of her face and the majority of her lips to protrude.
When she first came to UA three years ago from Egypt for her MBA in strategic administration — the first of two master’s degrees she would pursue — Lamise and her family had given up hope of treating her condition after failed attempts when she was younger.
But a group of UA professors and community members rallied around Lamise. They formed Team Lamise and started a GoFundMe account (www.tinyurl.com/TeamLamise).
Also, a community fundraiser in June at the Rockne’s in Akron, spearheaded by reader Tim Gill after he read stories about Lamise, raised more than $17,000. The fundraiser included tickets personally donated and sent by well-known bands, including Kiss and Lady Antebellum.
Gill knew many of the musicians from his early years working security at Blossom and the former Richfield Coliseum. On Thursday, he said the fundraiser was “a great event put on by a lot of great people. … All the bands that donated always ask about Lamise.”
Gill said he’d like to make the event an annual fundraiser for Lamise and already has more ideas.
Lamise continues to be amazed by the outpouring of support she has received from the Akron community and beyond with each story.
She even received a letter from Richard W. Smith, the president and CEO of FedEx Logistics in Memphis, which oversees FedEx Custom Critical in Green, where Lamise has been an intern since the summer.
Smith told Lamise that while she expressed awe for FedEx, he admired her.
“Pursuing multiple advanced degrees and holding down an important internship role, all while weathering trying physical procedures with an amazing level of grace and forbearance … I have to admit to being simply amazed by what you’ve achieved,” he wrote.
Said Lamise: “I felt so grateful especially with the latest article, I received very positive feedback from my supervisor, and from the CEO FedEx and of course from normal people in the street. It highlighted the message that I wanted to share with the world: that we are all having our own battles and challenges, and it doesn't mean because I look different than you that you have to show empathy or deal with me like I am a sick kid. People saw me as a strong young lady who is not submitting to social norms and social standards of beauty.”
Lamise’s third treatment will start on Sept. 9. Her first treatment was particularly aggressive. The second in April was not as aggressive, and did not have as good of results, so this third treatment will again be “extreme,” she said. She is not sure what to expect.
Her brother has once again traveled from Egypt to be with Lamise. She is planning to return to Akron at the end of September and to return to her FedEx internship, which was renewed for the fall, in October.
Costs continue to be a big factor and stress. Lamise said the Boston hospital wrote off $21,000 for the first two procedures, but it is still unclear if there is more due after pending bills are settled.
Lamise and one of her UA mentors, Myra Weakland, have been working on finding insurance. They have found that while she can get coverage for her condition in Ohio, the treatment is not available in Ohio and the policies only cover care in Ohio.
Lamise also needs to renew her visa so she can enroll to complete her remaining UA classes in the spring.
The GoFundMe and fundraiser money of $80,000 are mostly being held for her medical expenses, though some has been used for her fall internship fees since her paychecks from FedEx have been used to pay for rent, living expenses, books and Boston expenses, Weakland said.
Said Lamise: “Sharing my story and being called BRAVE FACE really changed my life and helped me open up and share special moments in my life with others. Some of these moments were sad and some were happy moments, but all in all it's my story and I am so grateful that I shared it with the world to see how much love and support are out there, and I just needed the courage to share my story to be able to see it and feel it.”
Beacon Journal consumer columnist and medical reporter Betty Lin-Fisher can be reached at 330-996-3724 or firstname.lastname@example.org. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.ohio.com/topics/linfisher