NOAH AOC

My name is Jill and my son Andy has albinism,. I think OCA1b because he is such a blonde. I just wanted to write a lil note. When Andy was first diag I was so scard, Cried every night and ate, sleep, read and look up albinism. I did this for about 6 months. Finally, after I kept reading about the older kids, and they were doing fine for the most part I calm down. Andy finally at 7 months started to crawl and roll over. He walked at 12 months. He is developmentally fine. He (thank goodness) only has the albinism. He is 3 and started preschool 2 weeks ago. He is amazing. We are VERY lucky. We live in an area that has a few people with albinism in the tristate area. We got involoved. We have met so many nice parents. Many moms on here have been a lifesaver for the past almost 3 years. Once you new parents are over the inital shock, see if you can find other people in your area that belong to NOAH. Go to events. Last year we hosted a Bowl a thon. It was wonderful because some people brought their parents. My mom and dad got see too other families dealing with the same thing we were dealing with. It just feels nice to be with a group of people where explaination is not needed. Or even just laughing at what somebody said at walmart to you. The conference is in DC this summer, if you can go. It is so worth it! We went when my son was about 18 months. It was so nice seeing the older kids act normal and adults with albinism saying they are married with kids and have jobs. We are going to go to this one too. I know when Andy was first diag all I could think about is that. I just wanted to say, my son is 3 and doing great. I never thought it would be this way. He is a normal kid that wrestles with his sister. He wears glasses, sits to close to the tv, wears sunglasses outside and a hat. It gets better as they get older. The worrying will always be there, but I do not worry as much. Hope this helps  a lil.

 

Thank you so much for this message. It is a real encouragement to us who have children with albinism. i have learnt alot from the NOAH website and though i have never reacted, NOAH has been a source of comfort to me. I can relate very well to all you have said, the fear, the uncertainty, the worry. i still do worry but not as much. As a mother of two young children with albinism this forum has been very helpful and i'd like to say thanks to all those contributing. My kids are 17months(boy) and 6months(girl) and i am still learning everyday especially from the experiences of those who have been where i am now, before me! i have a 5year old daughter who doesnt have albinism. My wish is to offer the kids the best in my ability. they are doing great and reaching their milestones in time. Thanks again!

time goes by fast that is forsure!! 

Hi Andrew's Mommy,

Your words have been so comforting to me. I feel as if I have in orbit for the last 48 hours. Our little girl (4month old Mollie) was referred to an eye specialist by our GP. He suspected Nystagmus (which I had noticed) but I was totally floored when the consultant announced to us yesterday that Mollie had a lack of pigment in her retina and was almost certain she had a form of albinism. I really didn't see it coming and he offered us very little additional information, hence why I am scarring the internet for some info. I couldn't even think what to ask the consultant because I was so shocked. We have to go for further tests in a couple of months. Mollie is such a precious angel. She's our first child and we love her more than anything. She has brought so much joy into our lives but I really just want to know how to give her the best in life with her wee condition. She has strawberry blonde hair with very fair eye brows and lashes. We never thought of albinism as myself and my younger sister were even fairer than Mollie as babies. The eye doc was encouraged at the amount of vision she seems to have even at a young age, She follows objects, recognises familiar faces, loves mirrors and reaches out for toys and teddies but I've no idea of what she will be able to see later in life. She doesn't appear to be light sensitive and obviously has a degree of pigment in her hair and skin. I don't know what any of this means and am still trying to piece together what the doctors didn't bother to inform us of! I didn't even realise that their were different forms of albinism until I looked in the internet! I just have no idea what to expect in life for her now or how to help her and our next appointment is 2 months away!! Sorry for rambling on but it's just so good to offload to friends who have felt what I'm feeling. We live in Ireland. I'm sure there is support out there somewhere and I'm hunting it down as we speak,

 Kind regards

Mollie's Mum (PS thanks for listening

Hi Mollie's Mum, and welcome to NOAH.  I remember those first few days after my son's diagnosis and believe me when I say, all of us have been there.  This site has lots of good information.  It sounds as though Mollie is coming along well.  Hang in there and love little Mollie!  I had my second son on 9/25/09, so they are probably similar in age.  I can't believe how fast he's growing!

Hi Mollies Mum, welcome and congratulations on your little girl. My daughter had strawberry blond hair when she was born too. My daughter actually gets a very slight tan and my sister is white and freckled, never tans. So we joke with her! I hope you can get connected locally. It was so reassuring for me when I got together with other people with albinism. The kids played and the adults led fulfilling productive lives. It just made me feel that my kids were going to be fine. Waiting for the next eye doctor appointment was difficult for me too in the beginning. If you have any questions or just need support everyone on here are friendly and helpful! Many blessing for your little Mollie!

Andy was 4 mpnths old as well when we found out about the albinism. I have been so blessed with many of the moms on here encouraging me and my hubby.Andy was not sensitive to light until he was about 2 1/2. Now he just yells for his sunglasses to look out the window :)

 I hope you find people in your area. Because it truly feels like a family when we all get together.

Hello all & hello to Mollies Mum,

 I haven't logged onto this site in a long time. I too am in Ireland, Dublin actually.  I have three children and my second child was born 4 years ago with the condition so I totally understand your shock.  Firstly congratulations on your new baby.  I know it's a terrible shock and I am so sorry you are going through this.  If you would like to contact me or if I can help you in any way please email me. 

 There is support out there for you and I have some contacts that I would be happy to share with you.  I have not been too much involved in the network here in Ireland but have always known that there are people I can talk to if and when I need them.  My little girl is doing wonderfully.  She has come on in leaps and bounds and is a far cry from the little baby who, in our experience, didn't see very much at all.  Now she sees more than she doesn't and functions very well.  She is type OCA1B which means she does have some pigment in her and therefore her colouring is not stark white.  She will be starting school in September and so that will be another milestone.  Her vision is better than we would have thought and beyond that she doesn't have any other problems. 

 I am only too aware of how your news was delivered to you.  Our experience would have been similar and it's an awful shock for you especially being your first baby.  I have since gone on to have a third and he is just 8 months old.  All is fine with him thankfully. 

 Please feel free to contact me.  This site is a great source of information and certainly helped me in the early days.  Now, however that I can see my little girl is everything I thought she wouldn't be, I don't feel the need to look up all the info anymore.  You will get to to that stage too!