Valley rallies to save Romanian’s eyesight |

Valley rallies to save Romanian’s eyesight

Nicole Frey
Preston Utley/Vail Daily"I want my life. Come on, I want to wake up in the morning and do my stuff."

AVON – Born under the flag of communist Romania with a plum-colored birthmark over a third of her face, Alina Ionescu’s life did not begin easily. Doctors believed the large birthmark was linked to mental retardation, and fearing the worst, Ionescu’s mother was forced to quit her job as a weaver in a factory to care for her.But foiling doctors’ predictions, Ionescu was as bright as the next kid. She attended school with her peers, but her birthmark set her apart. “I didn’t want to be around them because I didn’t want to give them the chance to be mean,” she said. “They said, ‘You know, you have a birthmark. You have to be strong. People will talk about you.’ It was difficult as a child. But then I probably grew three times as strong.”Although she hid during her childhood, Ionescu took charge of her life, attending college and earning a degree in graphic design. She secured a good job no small feat for a woman with a disfigured face in a country where prejudice is rampant, she said. But Ionescu wanted more. She was sick of Romania, and medically, she felt like she’d been short-changed. Romanian doctors consistently told her there was nothing they could do about the mark across her face. But at 20, the stain had begun to grow. A wart-like growth called a “bleb” had appeared on her face. It was sensitive, it bled easily – and more were on the way.

One day, on her college campus, Ionescu found a flyer for an au pair program. In exchange for her services as a nanny, Ionescu would be able to see a new country, be fed and housed and get a little less than $140 every week in pocket money. Ionescu was intrigued. “I had this feeling that out there, they must be something for me,” she said. Having cared for children for years, Ionescu loved kids, she said, but there was also an ulterior motive.”In the back of my mind, I thought I could even see if I could get help,” she said. Just over a year ago, Ionescu boarded a plane and landed in a town outside of Seattle. There, she cared for the children of two plastic surgeons. Living with doctors may have given her some insight into her condition, but they weren’t interested in helping her. She was the nanny, they were the bosses, and that was the extent of the relationship, she said. Their disinterest kept her silent. When the family moved to Virginia in August, Ionescu, now 27, relocated to Avon to care for another child.”Everything good that happened in my life happened when I got here,” she said.

It was in Avon that Ionescu first got proactive about her birthmark — which turned out to be much more than just that. Going to the Web site, she discovered she had Sturge-Weber Syndrome a congenital disorder than caused the port-wine stain on the right side of her face, surrounding her eye. Sturge-Weber Syndrome could also cause blindness, seizures and loss of motor and cognitive skills. “I didn’t know because they don’t have a name for that in Romania,” she said. “They don’t know anything about it.”One man on the Web site said he knew a woman who had lost her eye at 30 because of glaucoma caused by the syndrome. The 27-year-old felt the first prickles of anxiety. While her eyesight was still clear, the range of vision was reduced to tunnel vision. Waving her hand next to her right eye, Ionescu admitted she couldn’t see her hand. “I didn’t even have the money to go see an ophthalmologist,” she said. “I said, ‘I’m OK,’ because I didn’t want to think about it … I don’t have the money for this, but I kind of have to do something.”Ionescu knew after the initial visit, there would be more more doctor visits, more bills. “When you don’t have money, you don’t think about what you’re going to lose,” she said. “I didn’t think too much to be so depressed.”

Instead of getting down about her lot in life, Ionescu got busy. When she moved to Avon, Ionescu had contacted the Salvation Army about volunteering her time. Now she called the aid group for help. She explained her situation to Tsu Wolin-Brown, the only full-time community case worker in the Vail Valley branch of the Salvation Army, but met with some disappointing news.”We don’t do medical usually because it usually opens the floodgate,” Wolin-Brown said. “But this felt like a ‘fall through the cracks’ type of deal. You go blind because no one can help you.”While Salvation Army couldn’t help, Wolin-Brown reached out to the charities in valley. In the meantime, she told Ionescu to get the eye exams and mail her the bill. “I didn’t believe it,” Ionescu said. “I thought, “Whoa, what if nobody will pay this? What if I will send the bill to this fax number and nobody’s there?’ … But they did.”

Doctors at Vail Vision didn’t have great news: 80 percent of Ionescu’s optic nerve in her right eye was damaged. Another 20 percent and she’d be blind. They began a rigorous schedule of medication, changing them every few weeks. For three months, they mixed cocktails of eye drops nothing worked. “I thought, “I’m going home. I’m going blind. Goodbye,'” Ionescu said. Dr. Todd Maus, of Denver Eye Surgeons, agreed to take a look. His diagnosis was even more severe than that of Vail Vision: 90 percent of her optical nerve was damaged. Maus would do the surgery, but it had to be within a month or he wouldn’t do it it would be too late. And even if he operated, there was only a 50 percent chance of success. “I felt I’m going to die,” Ionescu said. “Then I cried because I knew there’s no money. I said yes to something I have no idea how to deal with.”Maus agreed to give her Medicaid rates, but that still left her with a bill of almost $2,000. Once again, she called Wolin-Brown, who rallied local charities, including the local chapter of the Lions Club, a service club that focuses its philanthropy on vision. “It’s not a fun thing that she has,” said Dr. Steve Oakson, a member of the Lions Club and a local dentist. “It looked like she needed help to try to save some eyesight. She seemed like a very earnest person, a hard worker. I think all the members of the club were really excited that we were able to help.”

The operation was a success. Though there have been ups and downs since the surgery two months ago, Ionescu will keep her eye. Now that her eye is out of danger for the most part, Ionescu is moving on to the stain and growths on her face. The blebs not only plague her cheek and nose, but also the inside of her mouth and in her brain, where they could cause seizures. When she brushes her teeth, they bleed. When she sleeps, they bleed. She may already have had small seizures she doesn’t know about.”I want a normal life,” she said. “I don’t want to wake up every morning and wash my pillow case and my pillows because it’s full of blood. I want to wake up and go to work.”After undergoing surgery and the possibility of waking up with just one eye, the laser treatments used to cure the stain and blebs seem like child’s play. Tomorrow, Ionescu will go in for her first laser treatment consultation, funded by the Salvation Army, but how she’ll pay for the actual treatments is still a mystery. Ionescu has gratefully accepted past donations and knows she needs more, but it’s not easy.”It’s hard because I know I can’t pay back in the very near future,” said Ionescu who fully intends to donate to the causes that have helped her. “It’s hard knowing that I owe so many people. It’s all about money, and that’s not right. But I want my life. Come on, I want to wake up in the morning and do my stuff.”Staff Writer Nicole Frey can be reached at 949-0555, ext. 14621, or Vail, Colorado

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