Valerie Melendi

Valerie is my sister and I thought I'de talk about her here after reading all about other Aicardi girls. She just turned 18 and we had a big party for her.
A lot of doctors didn't think she would make it this far and have even criticized my parents for keeping her alive. They said it wasn't fair for her siblings. I can't speak on my other siblings behalf, but I'm pretty sure they feel the same way about having Valerie as a sister as I do. I don't feel in any way that my life was changed negatively by having her in my life. If anything it's taught me to be more appreciative of everything that I do have in my life.
She was born when I was 10 years old. I was confused at first because my parents kept a lot from me to protect me. I thought she had a one of a kind condition and no doctor would know how to treat her, whereas my younger brother thought that all babies were like Valerie.
As we grew older and learned more about her condition we were more at ease and just loved her for who she was. She smiled when we kissed her and she reached for toys (mostly toys that had lights and/or played music) that we held out over her. To us she was just Valerie, our sister who we loved, not something to be ashamed or scared of.
She suffers from the same problems that most other Aicardi girls suffer from; she has seizures, is partially blind and can't walk or talk. Her medications are constantly being checked and her seizures go from being a rare thing to having some really bad ones almost daily. She has a feeding tube and a trach due to her almost at one point constant aspiration caused pneumonia. Right now she is getting fitted for a new trach and should be out of the hospital by tomorrow.
I know from reading a lot of others stories that I'm not alone in feeling that having an Aicardi child in the family has been a blessing in disguise. I imagine being a mother and finding out that your child has this syndrome is devestating, but there is also a wonderful life ahead to share with your child and the rest of your family despite the syndrome.