About a girl
The story of my little sister Marta
Ten years ago my sister Marta, a cutie little girl, died whe she was only 22 months old.
You probably don’t know I had a sister born when I was 23. How did it happen? My father got married again after his divorce and, after about two years of marriage, on December 8th 2003 Marta was born.
Becoming the elder brother at 23 was awkward. I could have been her father, rather than a brother, but I couldn’t wait to hug her and see her grow up with my own eyes.
Fate decided otherwise.
I was there at the hospital that morning in 2003. We were so excited. We were just waiting outside the delivery room for the doors to be opened with the announcement of the happy event. When it happened, however, it was clear that news weren’t so good.
Marta was declared suffering from a syndrome that doctors called Nager Syndrome (or something similar). Her joints were almost all malformed, in particular the right elbow, ankles and especially the jaw. Marta could not swallow or breathe independently, so doctors applied a tracheotomy and a stomach tube. She had to breath through a hole in her throat and she had to be fed directly from the stomach (only liquid food even after weaning).
The doctors kept her six months in the hospital studying how to keep Marta alive improving her conditions. She underwent some operations to enlarge the jaw a little. Doctors applied some sort of external device to the sides of her cheeks that made her look a little Frankenstein. She also had to keep her right arm up, so as to stretch the joint as much as possible.
In those months, I could see her only from behind a glass. Only her parents were allowed. And yet I was not alone behind that glass. Even my mother stretched out her neck and waved trying to capture a smile. Without her beside me it would have been much more difficult. (Thanks, Mom! I love you!)
Then Marta came home. My father and his wife had to learn how to handle a child who needed more attention than others of her age. They not only had to change her diaper or calm her down when she woke up. They had to constantly clean the tracheotomy from the mucus, they had to feed her with patience to allow the stomach to hold the food, they had to force some exercise on her to give a little tone to the muscles that she could not use (her joints didn’t allow her to crawl or walk).
But Martha laughed, and how she laughed! Her smile was accompanied by a kind of gentle breath coming out of her tracheotomy. Whenever you felt that breath you knew that, despite that little body so difficult to maneuver, she was happy. Yes, Martha was happy. She was happy when I read her stories aloud, she was happy when she played with patches, scarves and cloths, she was happy when she left the house for a walk around the block, she was happy when she exercised on the mat. And then all that hair!!! I had never seen a baby with all that hair before!
Each and every day was a new day in her life, one day more. According to the doctors no child had lived for so long in such harsh conditions.
Then a strong bronchitis took her breath away for just a second too long. The cerebral edema expanded rapidly. After a few days Marta fell asleep … and never woke up again.
It was August 5th, 2005.
Dear Marta, after ten years, the memory of you is not gone. You can not forget all the love that in only 20 months you gave to me and to all the people who met you.
This page I leave to the world tells your story. And believe me, no matter how brief, this is a story worth telling.
Bye Marta, I love you.
Your brother
