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Nikki - posted on 12/01/2010 ( 22 moms have responded )

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hi, my name is Nikki and im new to this website, i just had a baby Oct 19 and about two days after my son Ryan was born the doctor told me that he had some sighs of being an Albino. then at his newborn check up they weren't really sure one doctor said no another said yes. A week or so ago we went to a specialist, she told us that he is a type 1 albino, my husband and i have read a lot about it and we (well me) don't really understand it. every day i read more and more about it and i just more and more upset. My question to everyone is how have u dealt with finding out that your child or children have albinism?

22 Comments

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Charika - posted on 11/09/2012

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My baby is 4 now, i thought i had delt with it but last nite she asked me why i painted her white and not painted her like me... i could not help nor hold back my tears..

Nicole - posted on 10/06/2011

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lesley, have you tried contacting NOAH for your son in the teen /child forum? he can meet others online just like him there. the url is albinism.org



i ran into a small boy like that while at the mall he got to meet my daughter and he looked over joyed to not be "the only one". its what i think i may do for my daughter when she gets older.

Lesley Anne - posted on 10/06/2011

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I am new here. I have an 11 year old son who has albinism. Here in our country, not all people are educated about it. That is why my boy sometimes feel different in school. He has vision problems too.

Nicole - posted on 01/16/2011

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B's get most teh color they will ever have by preschool age. some may darken up very slightly after that but by grade school they wont get any more pigment then what they have.

Nikki - posted on 01/16/2011

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ohh ok see thats what i wasnt soo sure about if he was the a or b... so as he gets older he could get more color to his hair and his eyes could change color too..ok i wasnt sure.. all the lady said was that he was a type one

Nicole - posted on 01/16/2011

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Type 1A is the worst case of albinism there is . Worst eyesight no pigment at all or ever able to develope any the are white and always be white. Type1 b you can have color or will develope color. B's have better eyesight then A's . They over lap however so not all B' have better sight then A's do. The difference is that the proteins that make color will work howeverpoorly for B's and not at all for A's .

The fact your son has white hair and some color to his skin and blue eyes and not violet means he is OCA1 ( type1) B
Now if he had violet eyes in normal lighting like my daughter and white hair and skin he would be type 1 A

Nikki - posted on 01/15/2011

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awe that was a very cute video.. i never really noticed the ppl in those movies even tho i havent seen all of them... i just recently heard about the movie powder after i had ryan i havent watched it yet.. but i look it up on line ... ryan is pretty good when we are out side he will close his eyes a little but we already got sun glasses from him that he will wear...if u look in his pictures he looks pretty normal.. hes eyes are like a blueish gray.. he had fair skin but the white hair.. the specialist said he is a type one albino... im not really sure what she meant if he was the a or b.... i work with him everyday with his toys to get him to see them and play with him.. hes starting to grab more toys now i think he is starting to teeth so he is grabbing and chewing on more things but he will watch the tv or follow sounds and play with toys so im not really too worried about him any more... we go to the eye doctor in feb i hope he can tell us a little more!

Joyce - posted on 01/15/2011

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Ahhh, girls, I'm back and fine now.
In seeing those beautiful babies, my heart filled up with the very same emotion that I felt when I held my baby, babies, for the very first time and it was so strong that it overwhelmed me to the point of emotion overflow.
Good luck and GOD bless you, and all mothers of our very special babies.

Joyce - posted on 01/13/2011

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OMG, Nicole!!! The video!!! I never cried for the condition of my son but seeing the video~~~the tears won't stop and I don't know why.

Nicole - posted on 01/12/2011

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it put the video at the top =( any ways the video is made by a mother on albinism.org AOC. her daughter lyra is cute as a button and is OCA1A like my daughter is. it will also show you other children of parents that submitted their photos for the creation of this video from the AOC.

Nicole - posted on 01/12/2011

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When my daughter was 2-3 month she would scream when we took her outside. i would invest in sunglasses for that age though the only sunglasses we found wiht a band on them to keep the on the babys head were baby banz sunglasses. almost 20 bucks a pair>< we got them cause we thought they were worth it and the first size will fit till they are two years old.

By the time she was 5 months old i had her in a pool swimming in her little baby float. she wore her sunglasses hat and was lathered in sunblock. she did not wear a full covering body swim suit either. My last genetics appointment told me that they can lead the life of every one else they just need sunblock and sun glasses. they are not porclin dolls that can easily break so don't worry too much. it seemed to me that Genetics was the most comforting visits i had.

you wont find cinnamon albino on the web its a non technical term. have to remember her son was a kid a while ago if he is an older adult now terminology has changed since then and much more information is available.

if your son has white hair but color in the eyes he is like you said OCA1 but a or b will not be known unless you 1 get tested or wait till he gets more color. My daughter we have to wait and see and we got her tested... they found a mutation that haven't seen before along wiht one that is more classicly seen with oca1b so we still have to wait cause no one knows how that first mutation is going to react.

there are people out there with albinism that do not even look like they have it because they are OCA2 or OCA1B. Your childs eye color does not even become its final color till they are a year old. so he could get more blue.

these may help you feel better Nikki.

http://www.facebook.com/pages/American-G...
http://www.parentofachildwithalbinism.co...

Working with your child is the best thing you can do. i would not consider it pushing your child but i have seen how working with vision vs not working with vision makes a world of a difference. Being smart has nothing to do with albinism. my daughter is one smart cookie and excels pretty well and was listed above her age for development but every child is different and every child with albinism is different.

Joyce - posted on 01/12/2011

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Yes, you can say that my son was/is lucky, but I feel that I am the lucky one for being surrounded with family that knew nothing about his condition but were overflowing with 'mother wit' and showered me with it. I have been blessed in many ways and you have too. Find the mother wit inside you and run with it.
Joyce

Nikki - posted on 01/12/2011

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i tried to Google cinnamon albino last night and i couldn't find anything..ill have to look up the picture... hes eyes some times go from side to side they arent that bad but he is still young so there is till time for him to change... u only see the red tint in his eyes when hes in really bright light or in pictures with a flash...im not sure how he will do in the sun yet but i still have time to find out..ryans hair is white..it seems like its starting to turn a little blond... unless its just me..but i cant wait till summer time so we can play outside.(he might still be too young by then)... im glad to hear that ur son did very well as he grew up..he seems like a very lucky guy to have u as a mom! i hope i can be as good as a mom as u are. i look forward to ever moment i spend with Ryan.. i cant wait till he gets older and is involved in more things..i know he will do great

Joyce - posted on 01/12/2011

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Yep, your son is a 'cinnamon" .At the hospital when he was born, they told me that the only studies at that time were from Great Britain and then told me he was/is a cinnamon. He doesn't have the pink ring in his eyes, but blue/grey eyes, rosy cheeks. really blond hair, not white, and sun burns in an instant, smile. He used to wear a blue long sleeved turtleneck sweater to play. He does have the rolling of his eyes ~~both the nystagmus and astigimatism meaning his eyes roll in both directions. When he started wearing glasses at 16 months, an operation was suggested but when the told us it would only stop the rolling in one direction, we refused. We couldn't see putting our baby thru a relatively useless procedure.

I just did a google for 'Pictures of Albino Children' and on page 16 you will see a little boy with glasses. That's close to how my son looked at that age. I found nothing about cinnamons. Next time you visit your son's doctor, ask.

And, I don't know if it's familial ( LOrd knows there are no geniuses in our families, smile), or genetic, but he is way above average intelligence. At age 5, he was not responding in school but at home, he was doing his sister's 3rd grade work. I saw an ad for Reading Research Foundation and took him to be tested when he was 7 and his IQ was 147!!! He topped out at 154!!! Look out! If this is true with your son, he's going to make you feel like a moron many times, smile. My son reveled in correcting me, smile.Even now, when we talk, I have to stop him with "Honey, please talk to me in baby-talk".

When he was 7, he saw a chess match and told me he wanted to learn. I bought a cheap $1.00 game and we all learned so we could play with him. Within 6 months we all gave up. He was not only playing a superb game but quoted the rules as he went along! He continued to play all thru high school and traveled all over the state competing. Noone in the family could talk to this child, he was so very far above us. He was known as Professor by us, smile.

You have so many wonderful things to look forard to, enjoy the ride!!

Joyce

Nikki - posted on 01/11/2011

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thanks... i haven't heard of a "'cinnamon" albino... Ryan (my son) looks normal he doesn't look like an albino he has blueish-gray eyes as well and pretty far skin color... hes hair is white but most people just think its blond... the only thing that most people notice is when he is in the light the reddish tint to his eyes.. im very luck to have him and i tell him everyday.. im always telling him positive things even tho he didnt understand.. im very happy God has given him to me... thinks, i feel a lot better from a lot of things u have told me!!

Joyce - posted on 01/11/2011

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You know, you mothers nowadays are so lucky that there is so much written about albinism.But it can be upsetting. When my son was born I had nothing. All I was told was that he is not a true albino but a 'cinnamon' albino,meaning that he has blue/grey eyes and that his complexion is 'rosy', not pure white.
We didn't know what to expect so we just treated him like the other kids until he started school. I went to enroll the kids in a new school and while we were in the office this teacher came in and told the clerk 'This is my child', meaning he was to be in her sight saving class. How lucky for us all. But all the stuff you read is general so I suggest stop reading and learn from your baby. Take it one day at a time instead of worrying about things that might happen years from now. Sure, I had some rather rude, or thoughtless things said by strangers and there were times I reacted like a mother lion, smile, but that's life. I started wearing glasses at age 9 and I was called mean things by other kids, so no matter what you look like or who you are someone is going to be cruel just out of meanness. Take it with a grain of salt and grow from it. Our children are beautiful, extremely intelligent and well loved and, of course, spoiled rotten. Let him now that he is your gift from GOD and as a result GOD made him 'different' so that all the world could see. Build his self-esteem and no matter what others say, he will know better because YOU told him so. Again, here's my email addr in case sometimes you just want to talk or vent. I am here. jhlt301@aol.com.
Trust me, you, Daddy and baby will be just fine.
Joyce

Nikki - posted on 01/11/2011

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im not sure why i still get up set.. i think its from some of the things i read on line... im very happy that i have him. and i know he will do great in life, im very happy that he didn't have any real problems like brain damage or something worse. im still learning about albinism, i think im more upset about how he will handle it when he gets older and how other ppl will treat him, im sure he will do great with everything he does in life and i love him no matter what.

Joyce - posted on 01/11/2011

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Nikki, I have to ask ~~ why and what makes you upset??? If she were a red head in an all brown headed family would that upset you too? We, each and every one of us, has recessive genes and before ultra sound, babies were a crap shoot. We take what the good LORD gives us and do the very best that we can for that child. And, if she were not albino, would you push her?? Be grateful and thankful that she was not born with a REAL defect, like brain damage or something equally devastating. There's NOTHING wrong with your child and your anxious fellings are surely felt, or will be, by her. Please don't let this happen. Just love her and let her advance at her own pace. I promise you, she will surprise you in the most wonderful ways. Thank GOD for her and set your heart at ease.
Joyce

Nikki - posted on 01/11/2011

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thank you Joyce for posting your comment, it helped me a little more.. same with Nicole. i still get pretty upset about the whole thing and i know i shouldnt.. i do a lot with my son every day, like playing with toys and looking at books and stuff. he will be 3 months on the 19th and i know being that young he cant see that well as it is..i have noticed that he is more alert with things as the weeks go by.. i was always up set because he wouldnt follow sounds or anything.. now he looks at everything.. he still has a few issues that im helping him work on like holding toys and putting them in his mouth or just picking them up in general.. he goes to see an eye doctor next month i hope he can give us a little bit of info on how his eyes are at this point... i know that he isn't different from there kids and i don't treat him different i know he many need a little extra help but that doesn't bother me.... i have been reading a lot of things on albinism and i still get pretty upset..but i think that's normal... thank u for your story it really makes me feel better to hear that your son is doing really really good!!

Nicole - posted on 01/11/2011

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I actually probably push my daughter further then i should. she is ten months now and every chance i get i try to make her walk on her own with out furniture. she can walk with her push toy which is something i try to get her to use over the couch as well. i have friends that are legally blind non albinism related. one is very lazy and decided to live off government money for the rest of their life and the other is going to school with the help of grants and his disability money so that way he can be successful in the IT trade.I would really like my daughter to take after him and realize that any disability there is to help her along not to keep her down and get cozy doing nothing.

for ten months she is ahead of the game her evaluation through EI has placed her about developmentally at about 12-15 months or so. Something things you only have to show her a few times and she picks up on it in just a day. im trying to worry less about her starting school when she is three. because for me that is still 2 years off.

Joyce im really glad to hear your son has a successful career. it gives so much hope. there are times where i worried that if she wanted to choses something like a heart surgeon that i would have to tell her that no she should probably pursue another career cause she may not be able to see what she is operating on clearly. As that is many years off i don't want to break her childhood dreams.

Joyce - posted on 01/11/2011

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Nicole, good for you!!! My albino son is now 50 years old and you are on the right track in getting the best for your child. You didn't say how old your daughter is but don't forget the Public School system. There are sight-saving classes that will teach your child to see far better than those born with normal vision. The classes are very small and every child get special attention and large print books.

I understand Nikki's confusion but, this is to both of you: Please DON'T allow your child's limitations to give you the mind set that they are 'different'. They may appear different but that doesn't mean that you should treat them differently. I was told at his birth by a hospital staff that had never seen an albino baby that he would be severly limited. That he would be color blind, never to see a blue sky or green grass, that he would not walk befor 4 or 5 years old, that he would never drive an car. On and on with the negatives. I cried for the lose of things that they listed. He walked at 15 months and does enjoy the sky and green grass. BTW, he started wearing glasses at 16 months and his sight is 20/200. I have 2 other children, neither albino, and our entire household revolved around what he could and couldn't do-couldn't comb his hair correctly, couldn't zip his clothes, couldn't wash dishes clean, and on and on. But a talk with his sight saving teacher changed all of that. She said "LET HIM GO!!!' I cried and gave her the list of things he couldn't do. She said "YES HE CAN! I have given him all the tools he needs to function." I let him go and OMG!! There are many many wonderful experiences that I can give you but I will just say this-- he excelled in EVERYTHING!! The one concession that I insisted on in regular school was front row placement. He went on to join the speech, debate, chess and German clubs and graduated from high school at 16!!! He has a Master's Degree in Chemistry and is now a Master Environmental Chemist for the EPA in a midwestern state. He drives with a daytime driver's license and has an extremely understanding wife who only lets him drive to work which is less than 2 miles from their home. Please enjoy your gifts from GOD as they are truly gifts. Even today he amazes me--he's also a computer geek, smile, with 5 computers in their home that he built from scratch. He taught computer classes for the Cystic Fibrosis org to handicapped and retarded kids for 3 years!! You know, they say that when GOD closes one door, he opens another. Find out what your child is interested in and support it wholeheartedly.You have many wonderful surprises in store for you!!! They are NOT cripples, please don't treat them like they are. Make no concessions for them and you will do well and they will do wonderful!!

My best to the both of you and if you have any questions or just want a positive boost from me, I am here. My personal email is jhlt301@aol.com. GOD bless all of you!!!

Joyce

Nicole - posted on 12/02/2010

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Have you went to albinism.org?
i have been there too. my daughter is OCA1A and we got the testing finally by the graces of god and are hoping to get the results soon.

There is really nothign to be upset about. Start Early Intervention as soon as possible because it will give your son a great head start. i was in your shoes about 9 months ago now. i started my daughter with Early intervention and her eye doctor said she has Some of the greatest functional vision he had seen on a 5 months old. he told us to come back in march so we will. she will need glasses but she gets around great.

your son will have limited actual vision. but if you get him to learn how to use the vision he does have well he will be far better off.

As for dealing with it. myself i was quite excepting from the start till i found out about the vision problems...after learning more about albinism the more we think my sister has it because she fits OCA1B almost dead on. she could never tan and my daughter looked like she did at birth. for me i was like oh well i guess i need sunblock and lots of it!

For my SO he was in denial and trying to say she doesn't have it. the more he read the more depressed he got. especially when it came to the vision. He found his light at the end of the tunnel when time had gone by a bit and saw she was developing just fine and when EI started he saw that she was progressing rather fast. Then we got to seeing how other children that are older were doing through noah. one girl is a competition figure skater at 13 there are children between 5 and 10 doing well in sports like soccer. so its not the end of the world. Even adults that have it have become successful career driven people.

I did get an estimate on my daughter from our PO (the first guy we left cause he was no good. ) we were told she will be in the 20/200 range and that she is near sighted by 1.5. if you feel like any of your doctors are not giving you the best possible answer or you felt that you could know more then you need to seek a different doctor. they should by five months be able to measure the eye and tell you a rough estimate.

if this is your first child you will never know otherwise. i have a friend whose son is a week younger then my daughter. other then smile and laugh at toys just hanging there Kairi was a scooter before him a stander before him and gets around a whole lot better. she is now starting to turn pages in board books when i read to her. it takes time but trust me you wont be so worried when he does figure out how to scoot around you will be too busy chasing him =)

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