How many parents of A/M kids have A/M themselves?

[CMJ1979]

Hi Guys,
I'm new to this site and, first of all, I wanted to give all of you out there a big dose of hope, because I have micropthalmia in my right eye and nystagmus in my left eye and I have led a full and happy life. I'm 28 now, I have a good degree, a great job and a wonderful husband! I can't drive because of the nystagmus, but hey, there's worse things that can happen in life.
The other reason for my post is that my husband and I are thinking about starting a family. Although I have had a happy life, with few limitations considering my visual impairment, I don't much like the thought of passing this condition or similar on to my own children. The lack of knowledge regarding genetic links is frustrating and I don't think research is going to move on fast enough to really help us out much. SO, I WAS WONDERING, how many of you A/M parents have micropthalmia, anopthalmia or coloboma yourselves? I thought this might be the best way of getting an idea of whether or not I'm at much higher risk of passing on the condition than anyone else. Certainly, my parents did not have any of these conditions and as far as I know, they have never occurred elsewhere in my family either, but that doesn't help me much...
Anyway, much love and luck to you all and thank you in anticipation for your answers to this post.
CMJ :) XXX

[JessicaHolt]

Hello,

My daughter has micro in her left and a small coloboma in the right. I wasn't aware until after she was born, but I, too have a coloboma in my right eye. I was told in the past by one doctor that I had a second optic nerve in my right eye and another doctor told me it wasn't an optic nerve, but he didn't recall what it was called, but not to worry because it had no affect on my vision. After seeing a cornea specialist and retina specialist for my daughter the cornea specialist looked in my eyes because I told him what I was told in the past and sure enough, coloboma it was. We are now awaiting the results of the gene study and depending on the results we may have a chromosome analysis done.

Sorry that was so long, but hope it helped.

Jessica Holt

[CMJ1979]

Thanks Jessica.
It's interesting to know that you were totally unaware of your coloboma - presumably it has never affected your sight or the appearance of your eyes?
Do you think the fact that your daughter has visual impairments would affect your decision about whether or not to have more children? I hope you don't mind me asking, but my husband and I are tying ourselves in knots over whether to have children or not and although I know nobody can make a decision for us, I'm just trying any way I know how to gather viewpoints & arguments to help us reach a decision on our own :confused: .
Thanks again,
CMJ.

[JessicaHolt]

Hello CMJ,

We originally planned after Jadyn (our daughter with micro) was born we were done having children. She is our second, both girls, but after she was born we both decided we were definitely done.

I think a great person to lend you support is a lady named Vicci that I have had email contact via ican. She has micro and her child is fine. If you would like her email let me know. She has been my biggest support on here. I wasn't sure how my life would go on, it was a huge shock. We are great now and my daughter is almost 4 months and doing great.

My email address is JessicaLBell@sbcglobal.net

I hope that helps!
Jessica

vicci's email is: vicciradake@hotmail.com

[CMJ1979]

Hi Jessica,
I wanted to say thanks to you for your honest help but, more than that, I also wanted to let you know that, apart from being an emotional time for obvious reasons for me & my husband, reading through parents' stories on this forum and ones like it has really made me realise how much my parents went through with me as a child and just how amazing they are. You will be the guiding light that allows your daughter to achieve as much as she wants to in life and, one day, she will feel the same about you too.
With love and luck for the future,
Cheryl x

[Jodi]

Cheryl (CMJ1979)
You recently posted wondering if you could "pass on" your eye condition to your children. I wanted to let you know that Albert Einstein Medical Center is currently researching anophthalmia, microphthalmia, and coloboma. You can contact Tanya Bardakjian directly and she will give you sound, medical advice. Her email/contact info. is listed on the ican website.

Hope this helps!

jodi

[CMJ1979]

Thanks Jodi,
I'll give it a go...
Cheryl x