Comments for Parent of a Child with Albinism

Comment on Second Soccer Season by crystal endicott

crystal endicott — Fri, 20 Apr 2012 21:51:17 +0000

aww this is very discouraging my daughter has albinism and is desperate to be a soccer star. She is finishing her first season with the 7 and under group and she hasn’t been much worse than any of the other kids but she hasn’t made much improvement over the season either…not listening to her coach he has to yell her name ALOT repeatedly to get her attention, she seems so distracted and just kinda follows the group running for the ball but doesnt really get in their…however she couldnt be having more fun, every picture is a huge smile ( even when shes dancing out of boredom )…the eye docter said no running in bifocals so just plain sunglasses and i worry she can’t even see literally her coach asked my husband if she can see at all…shes just a little loopy headed to be honest shes easily distracted so i think its more about that than her vision….I’ll just sign her up until she stops thinking its fun I just dont know which sport would be best for her with her vision issues

Comment on About by andrea marino

andrea marino — Fri, 16 Mar 2012 17:13:46 +0000

I have a beautiful, funny and bright grandaughter with albinism. Hard for me to keep that in mind! but I agree the media has made this condition one open to ridicule and scorn. I hope all the children who grow up will have a positive experience to share with the world that albinism has not prevented them from doing. Yes, we all have a ‘condition’. Keep up the good fight.

Comment on Expressions by Paulette Pratt

Paulette Pratt — Wed, 08 Feb 2012 16:41:06 +0000

Thanks for sharing. My daughter also has albinism. She is 26 and a graduate of K-State. I have enjoyed all the posts. I can’t believe how much Lyra looks like my daughter Jen.

Comment on Functional Vision Assessment by admin

admin — Thu, 02 Feb 2012 06:36:59 +0000

Done

Comment on Functional Vision Assessment by David

David — Tue, 31 Jan 2012 04:35:00 +0000

Hello,
Thank you for posting all this useful information. I have spent the last two evening doing research for my son Zachary’s IEP meeting. After reading your posts and other websites we have realized we were heading for disaster. We were completely unprepared. Thank you for your insight.
I was trying to view Lyra’s functional vision assessment in order to have an example of what we need on our side but your link is no longer working and was hoping you could send me a copy by email.
Thank you in advance for your help.
Kind regards,
David

Comment on New Parenting Book Available by Samantha Hicks

Samantha Hicks — Wed, 25 Jan 2012 17:21:31 +0000

Our new granddaughter was just born with Albinism and I am looking for information on this subject to help us gain knowledge and understanding and to learn all of the precautions that we need to take with her.

Comment on Seasons Change by Anonymous

Anonymous — Wed, 18 Jan 2012 17:48:40 +0000

She looks exactly like my daughter which is now 26.

Comment on Seasons Change by Rajiv

Rajiv — Mon, 09 Jan 2012 07:46:32 +0000

Hi she seems a very bubbly child. I just want to ask what are you doing regarding her eyesight ? I am based in India and have a friend whose son has the same condition ( 5 year old ).

Thanks

Comment on About by Perception Is Not Reality

Perception Is Not Reality — Sun, 27 Nov 2011 19:33:34 +0000

[...] About Me [...]

Comment on Parents as Teachers by Cathleen Radl

Cathleen Radl — Tue, 25 Oct 2011 00:04:14 +0000

Finding a connection for myself and the education of my grandson hasnt always been easy some provider’s are surprised when I say he will do all he dream’s of and that mean’s collage to ;I ‘am searching to connect my grandson w/ more kid’s like him and educate myself on what more I can do for him