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Woman Living With Rare Genetic Disease Hoping To Help Children With Differences

NEW YORK (CBSNewYork) -- More than a decade ago, CBS2 medical reporter Dr. Max Gomez profiled a little girl with a rare disease.

Alena Galan was born in Siberia, Russia, and adopted at 3 years old by Marcia Galan from Westchester County. She was later diagnosed with a rare genetic disease known as MPS VI.

"When I came from Siberia, Russia, they told my mother that I only had five years to live," Alena told CBS2's Cindy Hsu.

At 8 years old, she met Dr. Max. He did a story when she became one of the first people in the country to receive an enzyme replacement infusion to fight the disease.

"She just seemed like an extraordinarily happy young child, considering everything that she was going through," Gomez said.

Every week for the rest of her life, Alena must get a five-hour infusion of medicine, and every time it arrives, she and her mom kiss it and give thanks.

"A lot of people say, 'Oh, you poor thing, you're getting these infusions,' but I'm like, no, I'm living," Alena said.

While she's been through multiple surgeries and is constantly in and out of the hospital, she was able to keep in touch with Dr. Max.

"She would send me some of her artwork and we'd reconnect periodically," Gomez said.

Meanwhile, Alena fell in love with singing, both at home and on stage. She's even performed at Carnegie Hall for a charity concert.

Alena is now 21 years old and a senior at Quinnipiac University. While she seems to be smiling all the time, she's faced a lot of bullying.

"People would judge me. People would make fun of me," she said.

So as a teenager, she wrote a children's book called "Differences Are Blessings."

Alena says she wants everyone to know they're "unforgettable, elegant and most often important."

She also designed a pamphlet for parents who have children with differences, and she lectures at medical schools, teaching doctors about her rare disease.

Her latest adventure was to find a summer internship, so she called Dr. Max.

"And he said to me, 'You can just intern for me at CBS,' and I was like, 'What!?' It just didn't even cross my mind," she said.

So after more than a decade, Alena and Dr. Max are back together, working on medical stories. Alena's dream is to have her own talk show.

"I can show other people that even someone so small can have a huge voice," she said.

Alena graduates from Quinnipiac next year, and from there, she'll work on getting that talk show. As for her health, doctors say she'll live a long and full life.

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