- Hi my name is Catherine and
- My name is Gwen.
- And Gwen has, what do you have?
- Alopecia.
- Alopecia is an autoimmune disorder
that attacks the hair cells.
A little over a year ago she gradually went
from having normal hair, eyebrows, eyelashes, everything
to being completely hairless.
Even though this has been an incredibly difficult time,
I am focusing on everything I can to help
her grow up with self confidence
and the knowledge that she is everything that she can be.
- Does alopecia give you that green tongue that you have?
(laughing)
We first noticed Gwen's hair loss in the summer.
We were traveling, swimming in the pool.
I noticed that her eyebrows were starting to thin.
I thought that was strange.
It kept going and Christmas time came around and I noticed
that she has this big bald spot on the top of her head.
I was like, what is that?
We called the doctor and showed these spots
and that's a classic alopecia areata presentation.
That's what it looks like.
So, okay, that's what we have.
It's really hard to look back at those pictures now.
It was really hard.
Sometime in March we started talking to her,
"Listen, you're probably going to lose the rest
"of the hair on your scalp, on your head,
"might be a good idea to go ahead and shave it."
We just said, it's up to you to choose to do that.
We're not choosing that for you.
This is your choice.
She knows her own mind.
She knows who she is and she knows what she wants.
And when she decides to do something' she's doin' it.
So sure enough one Sunday went outside on the back deck
and my husband got his electric razor
and my other daughter and me were there to support her
and take pictures and smile and hold her hand
and that was it.
That was her having lost her hair.
(quiet music)
One of the most important decisions
that I made was also one of the hardest decisions.
And that was the decision not to pursue
extensive treatments.
The pediatric dermatologist that we met with she had
a bunch of ideas for us.
She had five different treatment courses
that we could try.
And our decision was that we didn't want to risk
some of the side effects of some of these drugs.
And we knew that fighting for hair meant fighting
to make her somebody that she isn't.
It felt like it would be telling her that she's not enough
the way that she is and that isn't who we are.
That's not who my husband and I are.
That's not what we believe in and not the way
that we wanted to raise our child.
We wanted her to know that being who she is is enough.
We'll just fight to make this world a better place
that can accept her for who she is.
- This is my mom's face.
(giggling)
- It's really hard as a parent to say,
"Yeah, you're gonna look different.
"You're not gonna fit the norms."
But what I want her to take from this is that she is so much
more than her appearance or her hair.
She can be beautiful and be her without changing anything
to fit into some kind of societal norm of hair.
Sent Gwen to kindergarten this past fall
and everybody's been amazing.
Her friends see her just as we do.
That there's this super, fun kid to play with.
She is so much stronger than I expect her to be.
And she's so much more confident and articulate
and fun and I think that in many ways
the hair loss is accentuating some of her best qualities.
- So blog this video, do a great, great ending.
So blog this video, do a great, great ending.
I love you.
(upbeat music)