Alopecia World
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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.
Replies to This Discussion
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Permalink Reply by Seadra on
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Hey there, I see you live in Hawaii, I do too (Maui) sometimes...It must be so hard to see your baby struggle with trying to understand this condition. I was eight when I first started losing my hair. Just a big patch here or there but now at 33 I have Alopecia Totalis, a totally bald scalp. My eyebrows are falling out too for the first time. It is important to remember that your son's hair might very well grow in again, and might fall out again after that. AA progresses differently for everyone. There is someone out there who has experienced almost every scenario of hair loss and regrowth you could think of! The unpredictability can be one of the hardest parts, as it is the ONLY thing you can count on with this condition. You will find great support here with other mothers of kids with AA, and also from those affected by it themselves. My family was supportive of me as a child by not making an issue out of it. I was able to learn that hair (or the lack thereof) was not the most important thing about myself. I knew I wasn't "normal" growing up, but it helped me to appreciate the differences in everyone. I wish you and your son the best of luck...brightest blessings to you!! Aloha...
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Permalink Reply by Coreena Holmes on
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Thank you so much for your reply! Yes, your right I'm trying not to make this a big deal and I never let him see me cry. I wish I could find other kids in Hawaii with AA because he feels like he's the only one. Thank you again.
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No, I have not heard about the children's confrence where is it? And yes, your right, I talked with him last night and told him that his hair may not grow back. But I also let him know that if it does not grow back, hair does not make a person it's his heart that is most important. He seemed to have took that pretty well. I just HATE it so much when he comes home and says certain kids are teasing him, it breaks my heart!
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Permalink Reply by Marte Carlson on
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Hey Coreena!!! I was so happy to find this website too. My daughter is 3 and has alopecia as well. She really has never had a whole lot of hair so she really hasnt know much different. Part of me wants to think that if she was a boy it would be so much easier, but clearly as I read your message its really not. I keep telling myself that I am thankful that she just looses hair. She is not sick (not EVER) she is a wild naughty, normal little girl that looks like a boy.......I try to keep her in pink or purple all the time!! I had a friends 13yr old boy just recently die of cancer.....and I hate to say it but I am THANKFUL FOR ALOPECIA!!!!! I had never even heard of this or ever seen anyone with it, but its amazing how many people are out there and living a "normal" life with it. Kids just need to be educated.......i would DEMAND to have a meeting with his class, the school or whatever it takes. Sit down and tell this kids that he is still the same kid........he has a condition that causes his hair to fall out. He is not sick, he is overly healthy!!! Alot of times that is all it takes. I have so many of my older daughters (8yr old) friends ask why Maliya doesnt have hair. I just tell them her body doesnt like it. Kinda like a grandpa....sometimes they loose there hair..they think its funny. She also has a large birth mark on her cheek......I tell them about that....they are just kids and they just want to know!! You are coming into the summer months and what better time for a "new do"!! I tell you, ever day I wonder how and why this happpened.........and then I remind myself.........its because I can handle it!!! If my kid was sick......I could NOT handle that!!! God gives us what we can handle!!! I love the saying.......God made a few good heads.......the rest he put hair on! Have your little guy get on here sometime and check out all the cute kids and people. Its absolutely AMAZING!!
www.childrensalopeciaproject.org
They are amazing. They have a camp for alopecia kids!! We arent able to go this year, but next year we are totally in!!!
Marte
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Permalink Reply by Tami & Taryn on
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AMEN Marte!!
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Permalink Reply by kmunro on
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I understand well how you feel. It's shocking and so upsetting. My son is also 8 and lost all his hair (eyebrows first, then hair, then lashes) last summer. None of the treatments have worked for him and I was heartbrokwn for many months. I did my best to accept it and move forward, and my son was terrific about it (scared at first but he adjusted remarkably well once school started and he saw that everything was the same -- friends liked him, teachers treated him the same, parents told him his bald head was cool. You will see that things will be ok -- in due time. I used to tell my son that I wished he could have my hair, but after awhile, he said that he was glad I had hair and it was ok that he didn't. Kids are amazing. The best advice I can give you is to be open with others, but don't make it an issue. Be honest with your son and yourself (i.e. it may not grow back, or it may fall out again at any time). I tell my son that he's perfect the way he is (hair or no hair) and he is proving himself to be a "normal", confident, well-adjusted kid. I know it's hard, but your son will have maturity and empathy that other kids his age won't have or experience. You can't change it....so all we can do is change how we deal with it. easier said than done, but it will come to you in time.
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Thank you for your words of wisdom and encouragement!
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Hey Coreena Could you show Marcus an article online that my son Thomas (almost 8) was featured in on June 29th on Alopecia awareness. It might help a little. If you want Thomas to be a penpal with Marcus via e-mail, please let me know. Hang in there, it does get a little better for boys.
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Sorry, I have not checked my e-mail in a while. Yes! I will definately check the article and yes, I would love to have Marcus and Thomas to be penpals! Sometimes Marcus can feel very alone because he has not met anyone else with the condition.
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Can you friend me, so that I can give you Thomas' info for Marcus? I'm not sure how to do it. Thanks.
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Permalink Reply by Jen Deletto on
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I had to hold back tears when my 5 year old recently told me she was so excited to go to Disney because that is where dreams come true and she was going to wish for her hair to grow back. After I walked away and composed myself we again had a talk about how we don't know when and if it will grow back...we've talked with her several times about this and she's been in the room when her doctors have discussed it with us also. We went to Disney 2 weeks ago and she stood in front of the castle and made her wish. She then turned to us and said, "it doesn't hurt to wish right? You can wish for anything."
There is an upcoming children's event in Pennsylvania. The Children's Alopecia Project has organized it! Check out their website! It's full of great resources and they do parent chats several times a month. We will be going to Alopeciapalooza this year and my daughter is SOOOO excited! It's great to connect with other parents that are going through similar situations. Best of luck to you and we are all here if you need us!
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Thank you for your reply! I had to hold back tears reading your post. I really hope that your daughter's wish comes true!! I know my son wishes for the hair daily. It's hard when you love them so much and nothing you can do to make their wishes come true. I pray for my son and your daughter it's so sad sometimes that such young children have to go through this kind of a loss. I keep telling my son "hair" does not make him a wonderful boy, it's his heart and how he treats others that counts. I know at this age he does not quite understand what this means but i hope someday if his hair does not grow back that he will remember this. Good luck and I really PRAY that your daughter's wish comes true!
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