• What does he see? This is the question we hear the most! The best I can explain is with the video that is on our video tab but truly we will not be able to fully understand how much or how little Liam can see until he is old enough to communicate better with us. As best we can tell right now his vision is 20/270 which if you see the chart at the bottom of the page you will see that someone with 20/200 would only see the top “E” on the chart so someone with 20/270 would not even see that. We know he sees us because he can pick out in a group who is mama and who is dada but we know the vision is also very poor. He has multiple blind spots on his right eye and a few on his left that do not help matters much either. He does respond to bright colored toys and the larger the better but most need to make noise to get his attention the best. He definitely relies more on all his other senses because of his reduced vision. He tends to overshoot or undershoot when trying to grab at a toy but usually always gets it the second time around. We are hopeful that when he gets older he will tell us that he can see much better than we ever guessed or imagined!
  • Is he blind? Liam is considered Legally Blind meaning his visual acuity is worse than 20/200. He is not fully blind he can see a little.
  • What made you question his vision / How did you notice he had this? For the complete story see my blog post Liam’s Story. Basically we noticed the Nystagmus shaking first when he was about 6-8 weeks. We showed our GP and she referred us to Arkansas Children’s Hospital where eventually, after many tests, they found the cause to be Albinism. If his eyes had not started shaking so much it could have been a long time before we ever found out something was wrong.

  • How did they determine his visual acuity? The ophthalmologist had a stack of cards that were large and solid gray with only a small barcode on each one in various places. On each card the barcode image got smaller and changed positions. She would hold the cards up in front of Liam and if his eyes moved over them and locked on the barcode after a few extra seconds to look over them due to the nystagmus, then she would mark that he could see it. Eventually she got to a card where his eyes glanced over it again and again and he could not find the barcode. Each card was marked with a visual acuity if the child could see that card, Liam stopped at 20/270 meaning his visual acuity is around 20/270. ( On the chart below you will see that the top letter E is 20/200, Liam’s is worse than this meaning he would not see even the large E at the top of the chart.)

  • What causes it? The Nystagmus is a symptom caused by the Albinism which is genetic. (Inherited from the parent(s).)

  • Do you or Brian have it? No.

  • Will your other kids have it? There is a 50% chance with both our sons and daughters as well as with Liam's future children.
  • Is there a cure? Not at this time. There are several temporary fixes and trials going on but none yet have found a cure for either Nystagmus, the Albinism or the vision loss.

  • Will his eyes ever stop shaking? No. We have read that they will possibly continue to slow down up until the age of 5 yrs, but they will not ever completely stop.

  • Do his eyes speed up and slow down or always go the same pace? Liam’s eyes do speed up when he is tired or stressed. When his eyes first started to shake at 2months old, they were much faster than they are now so they have slowed down some.

  • Do glasses/contacts help? No. They only enhance what vision he has like a magnifier would so that he can better try to focus on the small objects/things. Basically the best we can explain it as it was put to us is that it’s not a problem with the “lense” that has a problem it’s the “film”. In other words the eye itself is fine it’s the retina/fovea and the nerves that have the issue and glasses do not fix those things.

  • Then why does he wear them? Our ophthalmologist wanted Liam to wear them because she is all about enhancing what vision he does have. Even with his eyes moving due to the Nystagmus she said we can magnify what he sees so that he can better try and focus on the small objects and that will eventually help him when he tries to focus on a book to read or things like that. His glasses also have transition lenses in them so that in the sun they change to sunglasses which he needs to protect his eyes at all times due to the Albinism. (Light is very painful to him and his eyes process light very poorly, causing one light source to be explosive and blinding.) If we did not have the transition lenses we would constantly have to take the glasses off to put on sunglasses when we go into bright places or outdoors.

  • Will he be able to drive? It is really too soon to tell for Liam. All the research says that they rarely pass the eye exam to be able to drive and even if they do most will choose not to drive because of the difficulty or several close calls. We have talked to one or two people who did pass the driving part and do drive but they say it is very hard and they have had to many close calls so they only drive when absolutely necessary. We will probably not allow Liam to unless his sight is greatly improved by that time because we would hate to endanger someone else’s child on the road or our own.

  • Will he be able to go to regular/public schools? At this point we are unsure if Liam will be able to go to public schools or if he will need to go to a special school for the blind. We have connected with Arkansas School for the Blind in Little Rock and though he does qualify to be a student there we would prefer he go to regular schools if he can. Until he is older though we will not be able to tell if he can handle public schools or not; we may try it for a year or two before we decide. I have spoken with a few families who’s kids have the same thing as Liam (some worse, some better) and they go to public schools with just a little special assistance. Some I have spoken with though prefer the school for the blind saying that they fit in and excelled so much better there than in public schools. So we will just have to wait and see.

  • How do they determine what type of Albinism it is and who it comes from? Genetics will do testing to determine who it came from and what type it is by taking blood samples from all three of us.
  • Which type of OCA does Liam have? Liam is considered a Carrier of OCA2, since carriers usually show no symptoms of having the gene but obviously Liam does, they have labeled him an expressing OCA2 carrier.
  • Does anyone in your family have it? No.

For more info than these quick answers please read our blog on the home page!

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