My Poor Baby!

I am new to this group and I'm glad I found a place where other people understand what I'm going through. I am a mother of a 8yr. old boy named Marcus (he is my BABY forever). He started loosing his hair in December 2009 and as of today he is completly bald and last month his eyebrows and eyelashes started falling out too! Last night he came to me and said "mom, I only have 3 eyelashes left on this eye and 5 on the other. My heart melted and I wanted to cry for him. I keep telling him give it some time and it will grow back, but will it? I pray that it does and the responses to his questions are getting harder I just don't want him to grow up feeling like he's not normal. I feel so bad for him.

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Permalink Reply by Sonia Rodriguez on August 10, 2010 at 8:25pm
Hello Coreena. My baby boy also lost his hair at a young age. He really didnt mind when he was younger because he hated getting haircuts. Its tough, especially when you are young. About four years ago 90 % of his hair grew back but now 80 % of his hair is gone. Frankie is 13 yrs old and he ask me everyday to get him a wig and my heart aches for him, he believes that the only reason he has friends is because he has hair....I know how you feel and I wish I could tell you everything will be okay. Some people do grow all their hair back but others will go back and forth. Right now I am researching alternatives for him. We have tried different ointments, steroid injections, and shampoos, but everything is a chance some people react differently. I pray every night for my baby to have hair, its even harder on the moms who go through this.
Permalink Reply by Ryan Hochhausen on November 21, 2010 at 7:12am
Hey Coreena,
Just wanted to put my two cents in, as I have had AU all my life (since I was 2). I know exactly how your son feels. I'm sure he feels what he has isn't normal, and even judges himself to be abnormal, with such a rare disease. I remember as a child when I was always teased, being called baldie, and having other kids ask me if I had cancer. When I would go to the grocery store with my mom as a kid, there would always be that one nosy adult that would ask what was wrong with me, if I had cancer, etc. I would look at pictures of myself, and to think to myself that I'm a freak; something unnatural. This would go all the way until I got older.
Eventually though, with age, people didn't question my baldness, and they would come to believe I merely shaved my head. Even now, I've fully embraced my genetic destiny, and I love being bald. I find it is truly something that defines my uniqueness in this world.
This is in no way an attack on you, but don't ever feel bad for him. Just love him like you're doing now. Maybe he'll grow out his hair eventually, maybe he won't. All you can do is support him with all the love you can ever give. You tell him he's your little angel, your "pumpkinhead" (an affectionate term that mom used to show she loved me no matter what), whatever it takes to show him that you feel no guilt or bad feelings about his condition whatsoever. Like I said, not an attack, just some advice, for I know exactly what he is and will go through.

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