Alena Galan is a bubbly 9th grader who loves Girl Scouts, clothes, singing, and her guinea pig Molly. But her life wasn’t always as full. At age 3, doctors discovered she had mucopolysaccharidosis type 6, or MPS, a rare genetic illness in which the body is missing an enzyme that's key to breaking down chemicals. Once these chemicals build up in the bloodstream, they collect in the bones and joints, causing stiffness and heart and lung problems. 

Alena was adopted from Russia, and her adoptive mother, Marcia, noticed odd symptoms almost immediately. 

Alena was short in stature, couldn't lift her arms above her head, was very wobbly, had tiny fingers, and always had a cold

Doctors told Marcia to love Alena as long as she could because she only had a few years to live.  

Three years later, their lives would change forever, when FDA approved a life-saving enzyme replacement therapy and Alena would be the first patient in North America to receive it. It acted like a miracle drug, and Alena grew 4 inches in the first couple of months of treatment. 

"The enzyme replacement is a miracle to me because it gave me life. I got the opportunity to live. Some other kids are not getting that opportunity around the world. I'm just very grateful," Alena says.

She's been treated every week since then and will continue to get the enzyme replacement for the rest of her life. When her medicine arrives each week, she kisses it. 

Marcia says Alena is a true inspiration, and her success story proves that medical research really can save lives.