Please take a moment to introduce yourself to the community. Everyone here has something to share about Microphthalmia. For the discussion boards, we ask that you keep your full name and location private.
We live in Northern Michigan with our 4 year old son and we have a 17 month old son born with bilateral anophtalmia.
I have anophtalmia (I don’t know if that is the correct word in english, in spanish is anoftalmia, born without an eye).
I’m 27 years old and I still don’t know why I was born with this disease, so I’m hoping that here I can find answers, or at least learn more about it.
Hello,
My name is Ann. My Daughter Nikki was born in 1975 with Bilateral Anopthalmos, and in March 2000 we were given a diagnosis of Aspergers.
Nikki has astounded me over the years, she is a superb pianinst, an excellent cook and an all round helper when it comes to gardening etc.
I am proud to be her Mum and together we share a really good life.
I look forward to chatting with you some more.
Kindest,
Ann
Hi my name is Cindy, I have a son with Microphthalmia. He is the first one in our family to have this condition. So my husband Aaron and I have had to do a lot of research on this condition. We have imbraced it and are excited to find out what God has instored for our son Kellan.
My name is Heidi and my 5 1/2 year old son was born with bilateral microphthalmia and no optic nerves. He is completely blind and therefore is developementally delayed as well. He is musically inclined and loves to play the piano and sing! We live in the US on the east coast.
Hi everyone,
My daughter Catherine was born in 1988 with coloboma and micro of the right eye.
Debby
My son has bilateral Micro, and has a brain disorder called Joubert Syndrome. I am also pregnant with my second child, who is going to be a girl Ava. I like to keep in touch with other parents and adults with micro.
Hi there,
My husband and I had our third son on Jan. 2nd of this year. He was born with right eye micro and before we had him, we never heard of this condition, or even knew it existed.
Since it is so rare, we have had a difficult time finding support from people who have gone through the same situation.
Hi my name is Kim and my son, Matt, who is 17 has Anophthalmia (right) and Microphthalmia (left). We are from Wisconsin and would like to talk with other families who face the same challenges…
MY SON WAS BORN WITH MICROPHTHALMIA
I am 22 years old and was born with microphthalmia and several other problems. We still do not know what caused my condition but we think I have Goldenhar Syndrome. I have a daughter who is “normal” in appearence but I believe she has some of the same traits as GS. I am here to help the parents who don’t know how to deal with their precious child. I am also here to answer any questions and maybe be able to find out more about myself.
My second daughter was born in October '06. At birth we found out that she had birth defects including microphthalmia in her right eye and hole in her heart called ASD. Thankfully her left eye appears to be fine. We are working with a wonderful ocularist in Dallas and her prosthetic looks great.
Our fourth child, Alex, is now 17. He has bilateral microphthalmia and no vision except some sporadic light perception in one eye. Because of his premature birth Alex has many challenges in life and the blindness is the least of our concerns. He has a wonderful team of educators and service providers who have taught him the Braille, life, and mobility skills he needs. Alex does not wear conformers at this time although he did as an infant and toddler. I am especially interested in learning if there is a link between anophthalmia/microphthalmia and autism and seizure disorders.
Hi my name is Diann O’Riordan. My son Jacob was born with microphthamia and coloboma of the right eye in 1996. He is 10 years old now and is unstoppable! It seems like a lifetime ago that we dealt with the initial aspects of microphthalmia.
Hi I’m Tina, 32, with 3 awesome boys. Ethan, 12, Logan, 4, and Evan, 1. Evan was born with right micro.
My daughter has PHPV in her right eye as well as Microphthalmia. I want to learn as much as I can on this condition and how it affects monocular vision. I also enjoy seeing photos of what the outcome is
Hi I am a mum who has bilateral microphthalmia. My husband has bilateral anophthalmia. We have 2 children Colette 6 with bilateral microphthalmia and Chris 5 who can see. I am happy to chat with anyone who needs information or just needs support.
My niece was born last week with bi-lateral microphthalmia. Until that day, I had never heard of this condition. I want to know as much as I possibly can and hear other peoples’ experiences which can be invalueable. I also need to know what kind of support we can provide to my niece as she grows up - aside from emotional support.
I would like to learn more about this disorder and see what the probablility of it happening in the same family is.