The case of Ashley stirred outrage. A nine-year-old girl from Seattle with static encephalopathy—a rare brain disease—was surgically and chemically altered by her parents to prevent her body and mind from maturing. They wanted to keep her small, dependent, forever a child. Immacolata, mother of Francesca, who has Lennox-Gastaut syndrome, writes what she thinks.
I just finished reading the article about Ashley in the newspaper, and I have to laugh—though it's not the laugh of happiness. It's the laugh of fury. Here's what happened to me: last Sunday I threw out my back making Francesca's bed. I'm still in pain. I walk like I'm stepping on eggs. I'm suffering. But not once—not for a single second—did it occur to me to keep Francesca small, to stop her from growing, to pretend she could stay a child forever. My husband and I were at dinner when we heard the news about Ashley. I said, "They're crazy." He said, "They did it for money."
But let me tell you about us. I am the mother of a girl—now a young woman—with Lennox-Gastaut syndrome. When I learned what they did to Ashley, I knew I could never do such a thing. Not for a moment did I consider putting Francesca in an institution, or trying to keep her small so she wouldn't cause problems as she grew. The day she became a woman—August 29, 1997—I changed her after breakfast and found blood in her diaper. My heart stopped. Not because I wasn't prepared, but because she was only nine. Too young! I cried. The doctors had warned me: this was a critical moment. Everything could change with her seizures. Thank God, it wasn't as tragic as I feared.
I want to ask Ashley's parents: why make your daughter suffer like this? Why surgeries to stop her from growing? How could you know she wouldn't have stayed small anyway? My Francesca is nineteen now. She weighs forty kilograms. She's one meter forty centimeters tall. Yes, she's small. My husband and I cannot lift that weight easily—with my three herniated disks, it's hard. But they are professionals. They have money for hired care. They could afford help outside the family to look after their daughter. My husband and I—we've done everything we can to give our daughter a normal life, even though her life cannot be normal. There are moments when she suffers, and with all my heart as her mother, I wish I could take her place, feel her pain during her seizures instead of her.
I am shocked at the doctors who agreed to do this. In my view, they stripped Ashley of her human dignity—her dignity as a person, even a different person. The truly different ones aren't these children! Why harm an angel who has no voice to say, "No! I want to be normal, just once!"?
I cannot accept what they did. Neither can my husband. I condemn the parents because they are selfish. They thought of their own future, their own comfort, not their daughter's. They wanted fewer problems. I condemn the doctors because they did this to make themselves known to the world. They have no heart. They operated on an angel—a conscious being, aware of her surroundings, just like my Francesca is, even though she has never smiled at us or fixed her eyes on ours. An angel deserves protection, not this.
They say they improved Ashley's life, that now she can have a normal family life. But how would she not have had that if she weighed fifty kilograms and was one meter sixty centimeters tall?
I don't want to see Ashley's body. I don't want to see her scars. I cannot imagine them—not as the mother of Francesca, and not as the mother of Nando.
These children are sacred. They must not be used for experiments. Ashley's parents have no honest explanation for what they did.
I look at her photographs, at her eyes, and I weep. If only my Francesca had eyes like that—eyes that could fix on you. I would be so happy. All three of us would be. But what do people do when they have that gift? They prevent her from living normally. They prevent her from being a woman, equal to everyone else—to healthy people—at least in that.
Immacolata Casullo, 2007
