What can they see?
People with albinism have a hard time explaining this because it differs for each person and they have no way to compare it to "normal" vision. The best explanation I've heard so far is that it's like a picture taken with a low resolution digital camera - you know what the picture is, but you can't see the details very well.
In terms of numbers, their vision can range from 20/60 to over 20/400 (which is legally blind) Although both boys haven't been able to perform an actual eye exam yet, the Teller Acuity Cards indicate they are in the legally blind range. So far it appears Fionn's vision is better than Emerson's.
Can't glasses or surgery fix it?
Unfortunately no. Let me try to explain (if there are ophthalmologists out there who want to correct me, please feel free!) For the average person with bad vision, it's the front of the eye where it focuses that is affected. This difficulty focusing makes their vision blurry.
For people with albinism, the retina and the nerve pathways from the eyes to the brain do not develop normally. This causes them to lack visual "acuity," or the ability to see details. They can also have problems focusing, and that can be helped with glasses, but their overall vision will never be fixed.
If they have severe nystagmus (see below) that doesn't get slower with time, or if their eyes start crossing, there are surgeries to fix those problems. Also, when they gets older, they can get colored contacts that will give their eyes a little pigment and help with light sensitivity.
Why do their eyes "glow red" sometimes?
Their eyes are pale blue, but since there isn't much pigment, lights often shine through and reflect off the back of the eye where the blood vessels are. This is also why their entire eye will turn red if you take a picture using the flash. It doesn't matter if the "red-eye" reduction is on...trust us.
Why do their eyes move around so much?
This is called nystagmus and just about all people with albinism have it. Their world doesn't move with their eyes, but it does affect the quality of vision. Their ability to slow it down is getting better with time and eventually it won't be as noticeable. It does tend to get worse when they are tired or upset, so we have to keep that in mind.
Will all your children have albinism?
Two out of two aint bad! Since it is a recessive gene, every pregnancy has a 25% chance of being a child with albinism. There is no way to test your first pregnancy for it, but now that we know we are carriers, we could find out about future pregnancies. It would require getting an amnio and comparing the baby's DNA to their DNA. But we wouldn't do it...the results would not change how much we'd want that baby.
What other problems are associated with albinism?
They have to take extra precautions to protect their skin from sunburn. (But really all children should be doing this!) Their eyes are also sensitive to light, so they wear extra dark sunglasses and hats outside.
Developmentally, Emerson has been behind while Fionn has been on track. No one seems to know if Emerson's delays are related to vision or not, but our anecdotal experience indicates that poor vision often affects fine motor and sometimes speech development. Having poor vision also certainly affects social development (how can you tell what social cues someone is giving you if you can't see the details of their face?) However, we are working with a team of therapists and have heard from other parents that almost all children with albinism eventually catch up.
Despite some general myths out there, the boys are not totally blind, they don't have to stay inside during the day, and it doesn't affect their intelligence. They also aren't arch villains and they don't have magical powers. Yet.