Hello all, my name is Anna. My 23-month-old daughter was recently diagnosed with a rare, incurable, genetic disorder called Monilethrix. It causes brittle, coarse hair that breaks easily and can't grow past a certain length. She was born without hair or eyebrows, and had nothing until about 14 months. When she did finally start growing hair, she maintained a large bald spot on the back of her head. We- along with everyone else- assumed she was rubbing her head in her sleep. As she got older I knew it couldn't be just that. We got referred to a dermatologist, who had only heard of this disorder in school. She wanted us to get a second opinion, so she referred us to a pediatric dermatologist.

Long story short, I'm in shock and grieving for my daughter and the fact that she'll be partially bald for the rest of her life. I know it's not the worst thing to be diagnosed with, obviously- after all she's healthy- but it's devestating nonetheless.

I have no idea what I should do. People are already starting to notice and make comments. I know it'll just get worse as she gets older. Do I cover her up with hats? I can't find headbands that are wide enough to cover the spot, as it's about 4x5 inches or so. Her remaining hair is too sparse and thin to comb it down over the spot. The doctor said I'd just have to keep her hair short, but honestly I'd have to shave her head down to almost nothing for the spot to even begin to blend in. Wigs most likely won't work in the future because they can rub off her other hair.

I'm just at a loss and in need of encouragement (and lots of answers that I can't seem to find since this is such a rare disorder).