My Lari

I came across this article tonight on Dr Sanjay Gupta's blog (he is the chief medical correspondent for CNN). I wasn't going to read it, but the picture was intriguing to me. This young woman happens to have the same condition that one of my little orphans in Romania has. Their two stories are so similar, it is frightening! However, the large difference is the ending -- this woman has a happier ending than my Larisa. It's an incapacitating joint condition called arthrogryposis. I had never heard of it until I was living and working in Romania and I got a hold of the medical records of one of my favorite little girls in the orphanage I volunteered at.

My little Larisa...oh how I miss that little girl (who is not so little any more; she just turned 9 here a few weeks ago!) I just want to take a bit of time and reflect on her, because she is so special to me. This girl freaking stole my heart, I will tell you! I haven't thought of her recently and was SO happy when I read this article, as it reminded me of her.

She was my daily delight at the orphanage. Days that I had a hard time getting myself up in the morning for work, I thought of her, which always helped. I was able to see quite a bit of progress for this little girl, which I always thought was so great. Naturally, it is great. However, her progress is progress you should have seen in a much younger child, not a 2 year old. Nonetheless, it was always exciting to hear her try to talk and see her attempt to crawl. It always made me sad knowing her condition could improve drastically just by physical therapy and/or surgeries. It's hard to see someone that has potential, stuck.

A few years ago, I was able to visit Larisa on one of my many jaunts through Romania. She happened to be in the hospital, which made it much easier to see her. I was able to go right in the hospital, where the orphanage, I had to go through Dr Ciabaneu, which usually has the potential of a bribe (which I didn't have to do when I did go to visit...but in order to snap a few pictures, I did bring her some flowers!). 

The last time I saw Larisa, she had gone through quite a few surgeries and continues to today. Last I heard, she was using a wheelchair quite successfully and they were hoping that she may have a chance at walking and using her joints a little more productively one day. I hope so. The only unfortunate part now is how developmentally behind she is from being in the orphanage. I hope one day...something good will happen for her!



Here is the CNN article:

 
Prudence Mahbena story: 21, was born in Zimbabwe with a crippling joint condition called arthrogryposis. By the time she was 8, it forced the amputation of both legs and most of her right arm. In a society that looks on disabled children as cursed or worse, her childhood was marked largely by cruelty and indifference. She found salvation at a charity school in Bulawayo, where she discovered her talent for music and joined with a group of similarly talented but disabled youths. Their story is told in the film “Music By Prudence,” which won this year’s Academy Award in the documentary short category. It will be shown March 12 on HBO. Mahbena spoke with Dr. Sanjay Gupta on a visit to New York.
Dr. Sanjay Gupta: I've visited lots of places around the world. I've been to Zimbabwe. I've been to many countries in Africa. What is the perception? How are people sort of thought of, that have some sort of disability? Are they thought of as people that people want to help, or in some cultures, are they thought of as a burden?
Prudence Mahbena:In Zimbabwe, whenever a child is born, it’s like it is all over the world. When a child is born, they celebrate, they do A, B, C. They bring presents and all that. But whenever a disabled child is born, that's when people start talking, saying bad things. You know, “Maybe you were bewitched. She was bewitched. Maybe it's a curse from God,” and all that. That's when you don't get to talk to your families, your families turn their back to you.
Gupta:How did you even think to start singing? It’s so happy in some ways. The music – when did that begin?
Mahbena: The way I started singing is very funny. I used to sing with my grandmum, when I was young, but when I went to school, I used to sing in the corridors, just moving around. And one day, I got to meet a teacher who later became my music teacher. She heard me singing. She said, "Who was singing?" I kept quiet, actually. "Who was singing?" And I said, "Um, it's me," and I thought maybe I was in trouble. (LAUGHS) Maybe I had made some noise, you know? Then she said, "Oh, OK." Then she left me. And the same day, in the afternoon, she called me for a choir practice. It was a senior’s choir, and I was the only junior. Later on, I led the whole choir.
Gupta: Your range is incredible. At what point did you realize, “You know, I could be famous?”
Mahbena: I realized that I was going to be a star one day when the director and the producer of the movie came, and they said they wanted to make a movie about us. At first I wasn't sure of them … but they kept on telling me that, "One day, you'll be a star. One day, you'll be a star." And when we did one of the shows, in the biggest theater in Bulawayo [a city in Zimbabwe], people were screaming. People were clapping. It's in the movie. That's when I recognized – wow, okay, I am a singer. I am a musician. And one day I'll be a big star for sure.
Please tune in to “Sanjay Gupta M.D.” on Saturday and Sunday at 7:30 am ET to watch the entire interview with Prudence Mahbena.