Microphthalmia Member Introductions

#43

Mother to Rhys aged 17months who has severe micro apthalmia in his left eye,his brain on the left side is also small and incorrectly formed. Rhys has developmental delays and possible eppy fits.

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#44

My daughter was born with severe micropthalmia in both eyes. She has small atretic nerves and she is missing her optic chiasm. She is only 7 weeks old and I was wondering does anyone else have a child with these same things and what are her chances of having any vision?

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#45

My name is Heather BT,

I have a three year old son with Micro & Peter’s anomaly. He’s Cute, Funny and smart and I just want to figure out how to teach him what he needs to know to make it in the world (including table manners).

Heather BT

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#46

Penny,

Acer doesn’t seem to have any sight, but he does seem to have a great desire to wave his spoon around!

He’s in early intervention with great teachers, but they’re more used to lower function kids and kids with sight.

Oh well, I just keep working at it, someday the food will hit his mouth properly I know it. He has great finger feeding abilities, and really does okay in restaurants because he’s pretty well behaved for three.

Heather BT

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#47

Hi Heather-
Does your son have any sight? My son Clayton is 19 years old, bi-
lateral micro-no vision and mentally retarded. Table manners was
probably the easiest to teach him. Just as you would a sighted
child. We started by taking him out to restaurants early on. Lot’s
of repetition,…lot’s of prompting. I would say the most important
thing is exposure to people and places outside the home. Oftentimes,
it was more stress (for me) but, worth it. Is your son in early
education program? If so, teachers can give you ideas/suggestions.

The road ahead it will be filled with plenty of obstacles but, the
accomplishments no matter how small outweigh all that!

Blessings to you & your family!
Penny M

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#48

Oh, hi heather…
nice to see you here.
:smiley: Yay. Another place to toss some thoughts around.
I love it.

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#49

I’m a mom of a two year old boy with micropthalmia/anopthalmia. I want to stay abreast of all things new and helpful. And I want to always be meeting new[experienced] people who deal with this and blindness. I’m glad to have found this forum and look forward to getting through some threads and articles. :smiley:

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#52

Hello,

My son was born with micro/coloboma in his left eye in May 2006. It’s been quite a whirlwind, but he is doing very well, and I think it would be great to connect with some people who are dealing with this.

When Jack was born, there was nothing online to help us cope. I think it would be of great help to parents who have a new baby born with this condition to SEE that these kids turn out great, and give them some advice as to what is it come and what they can do to ease the worry.

Any advise as to where to start making a great site to help out with this!?!??!

Thanks!
Alicia

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#53

Hi I am sorry I don’t respond to many emails mainly because my son isn’t a lot like most of the kids on this site. My son has bilateral micro and bilateral coloboma. But really his vision issues are the least of his problems. He also has a brain disorder called Joubert syndrome which affects the part of the brain that controls motor skills, balance, coordination and muscle control. He is 4 and still can’t hold his head up. So I am not much help to those of you that just have children with only visual impairments. I would respond if I thought I would be more help.

Most likely though you child will end up doing a lot more then you expect. A great site that helped me deal with the vision issues when my son was a baby was the Hadley school for the blind. They have free classes you can take at home to learn about how to raise a child that is blind or has visual impairments.

Here is a link:

http://www.hadley-school.org/

Wishing you the best!

Jessica mom to Jakob 4 yrs old with bi-micro, bi- coloboma, and Joubert Syndrome, little sis Ava 8 months old

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#54

For me (and maybe for others as well), I got to a point where I just needed to be with my son and the rest of my family. It’s easy to get sucked into all the groups on line, but when it came down to it… Those issues are just a small part of my life. :smiley: In a good way, of course. And I feel blessed that Sean’s condition is, for the most part, low maintenance.

HE’s blind and that’s my biggest hurdle. For him, it’s nothing. HE doesn’t know any other way… For me, It takes the help of the county services, School for the Blind resources and some internet research in order to make sure he’s getting what he needs in order to develop. But really, what parent doesn’t do that for their “normal” kid anyway? I like belonging to the groups. And I encourage it! I’m sure there are others out there that are more active, too.

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#56

Hi swalt. I wish I could answer more of your questions. I can tell you that my son used a conformer to enhance the eye socket growth in his anophthalmic eye. We’re never had any prosthetics or procedures suggested for his microphthalmic eye. I hope someone else has more answers for you.
Sincerely, Bethanne

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#57

I’m new to the group & have never met anyone who is familiar with micropthalmia.

My daughter is 15, from age 1 to 5 she worn a prosthetic shell-made by an occularist- it fit over her micro eyeball, it was large-to help the orbit socket grow. It was a nuisance, but she endured it for 4 years.

When she complained about discomfort at age 5, a new shell was made. This was again uncomfortable, so the opthomologist suggested to discontinue the use of the shell.

We were lining in Florida, since then we moved to VA, and NC- and the opthamologists have never mentioned using the shell again…
What is a conformer?

When surgery is mentioned by other members what are they referring to? Removal of the eyeball to fit a full prosthesis? Her opthamalogist mentioned that at some point in her life, the micro eye may become painful & need to be removed…is this why members are talking about surgery?

Also, she recently (2 years ago) had a shunt inserted to keep the eye pressure lowered, because her pressure was high. I welcome all comments…

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#60

Hi. My son was born oct 4 2008 and was diagnosed with microphthamlia. he is the only one in our families to have this condition.

Just looking for support and understanding of it. its very confusing to us and hard to find much research on. still confused to what our son has in store for the future.

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#61

Hi, We have a son who was born in 2006 with colombo and micro of the right eye. Like most of you, we never heard of this, but have been lucky to find an amazing occularist and pediatric opthamologist. He has just started OT in the last few months as we now know, but didn’t understand before the why, that with the single vision, he has no depth perception, and would scream at simple activities like carousels or trampolines or sideways motions - he is making great strides & is also learning his cross-over for fine motor (right handed w/ left eye vision). I am excited to see the page up and running, it’s been a couple years since we even looked on-line for stuff & hope we can all learn and help each other.

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#62

Hi

I'm 42 and I have micropthelmia in my r eye. I have never come across someone else with my condition before. A lot of people who see me think I had a cataract as it looks similar but it isn't. Any questions please feel free to ask. I had a son 6 yrs ago and he doesn't have my condition.

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#63

I am so happy for families for technology these days - my daughter was born 1999 pre-internet days.

I think i diagnosed her R) eye microphthalmia with PHPV and cataract looking thru an old encyclopaedia set (yes a hardcover set on our bookshelf!) when she was a few days old.

Unfortunately we haven’t been in the USA where they have treated microphthalmia and had no options. She is now a perfect healthy 12 year old with perfect vision in her left eye.

Yes she has her fair share of taunting such as “bung eye” etc and struggles with her school work and no one wants to help such as “well its nothing to do with her eye condition” but I am so happy to have her…remember no one is perfect and we are all beautiful.

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#64

I am absolutely interested in anyone with children diagnosed with Lenz Microphthalmia Syndrome.  I have 2 boys diagnosed that are 10 and 12 years old.

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#65

My 18 year old son has (Lenz) Micropthalmia.

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pinned #66
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#67

Hi,

I also have a 10yr old son with a micropythalmic eye.

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