4 Year Old Diagnosed with Type I Tricho-rhino-phalangeal - May Never Grow Hair

Hi Stacy. I don't have experience with girls with this kind of issues, But I have a nephew that was diagnosed with it almost seven years ago and I can tell you what did and didn't work for him. He was fifteen at the time, so it was more traumatic I think to deal with that age group of pears. He did have sparse hair so in the end just started shaving what he did grow. on the other hand it was probably easier for him in the respect that he had the understanding that he could talk about it and explain to people that he dealt with what his situation was. If I was your friend I would not get her a wig for every day, maybe just for special occasions. It's easier for the child and everyone around her to get used to it: accept it and go on with normal life if they get used to how she looks now, early on. At first there will be stares and questions. But after a while those people closest to her wont even notice it. And that is really who matters, right. A hat for going out side and keep the sun off is a good idea. The main thing is to not force a wig on her head every time they go out, just to avoid the curious looks, It needs to be fun and her idea.

Locks of Love & places similar (there are apparently more than 1-found that out when I wanted to donate my hair to somebody)
Since she is so small, maybe NOW is the time to get her some cutesy scarves & start the "devil may care" attitude toward it all. Who needs hair, etc. If she grows up around the same friends & in the same schools, it will be a lot easier to adopt that attitude than if she were a military child moving constantly. Hopefully that attitude will carry her through high school & she'll be okay the first time her wig falls off.
Thank God she's got a "cosmetic" disease that just affects appearance & not something that will limit her life!

My daughter has a different kind of disease that affects her hair called Alopecia Areata. So we know some of the heartache. Visit the www.naaf.org web site and you will find all kinds of avenues for hair products, scarfs, hats and wigs. Plus they have some awesome support groups and ideas. Locks of Love is great and a good place to start as well. We have worked with them and they are wonderful. As the child grows the choices for wigs gets better. Now a days you can do anything in a wig even swim. It takes a while for everyone to adapt but after that you will see how normal life can be with or without hair. Good luck to your friend.

As a survivor of chemotherapy, I lost my hair and had to wear a wig for about a year. They itch horribly. If she wants to wear a wig, be sure to get her some wig liners (small knit caps that fit under the wig). These minimiize the itching substantially. You might also check into large caps that completely cover the head. They look good and are much, much more comfortable than wigs. A good source for all of the above are the American Cancer Society's TLC catalog.