Ocular Albinism
What is albinism?
Albinism (say: AL-buh-niz-um) is a name used for genetic conditions that cause a person to have no pigment or less pigment than usual. Pigment is what gives our eyes, skin and hair their colour.
There are two types of albinism:
When the skin, hair, and eyes are involved, it is called oculocutaneous (say: ock-you-lo-kyoo- TAY-nee-us) albinism (OCA). When the eyes are involved, but skin and hair colouring are normal, it is called ocular albinism (OA).
Both types of albinism will cause your child to have poor eyesight. Each child’s vision will be affected in a different way. Albinism does not usually cause other medical problems or cause your child to have poor health.
We met with 6 different doctors and technicians - all were amazing with Ben. This was a very positive experience that we both had. The last person that we met with was the genetic counsellor - her name was Megan and she was very compassionate. Ben and I had a final meeting with her and she went over all the details of the information that we learned that day. I broke down crying when I asked her if Ben will have a normal, productive adult life. And that I didn't want him to be centered out at school, or made fun of for being different. Megan assured me that he will lead a totally productive and normal life - his abilities haven't changed. And he may be able to drive. Our job is to protect his retinas from any further damage - like UV rays. So we can do all this. I can handle this (that's been my mantra over the past few days).
Ben has also been registered with the CNIB - Canadian National Institute for the Blind. This will be a great benefit to Ben in the future. And yes Kim, you are right! He is our big, beautiful Ben.
Through all this, Ben is unchanged. It is daily life for him - what he sees today is the same that it has always been for him. It is no better or worse. He can still play hockey, construct with Lego, draw awesome pictures - hug his mom. I'm smiling now thinking about that hug. And he bakes the best banana bread.
Keep smiling!
We met with 6 different doctors and technicians - all were amazing with Ben. This was a very positive experience that we both had. The last person that we met with was the genetic counsellor - her name was Megan and she was very compassionate. Ben and I had a final meeting with her and she went over all the details of the information that we learned that day. I broke down crying when I asked her if Ben will have a normal, productive adult life. And that I didn't want him to be centered out at school, or made fun of for being different. Megan assured me that he will lead a totally productive and normal life - his abilities haven't changed. And he may be able to drive. Our job is to protect his retinas from any further damage - like UV rays. So we can do all this. I can handle this (that's been my mantra over the past few days).
Ben has also been registered with the CNIB - Canadian National Institute for the Blind. This will be a great benefit to Ben in the future. And yes Kim, you are right! He is our big, beautiful Ben.
Through all this, Ben is unchanged. It is daily life for him - what he sees today is the same that it has always been for him. It is no better or worse. He can still play hockey, construct with Lego, draw awesome pictures - hug his mom. I'm smiling now thinking about that hug. And he bakes the best banana bread.
Keep smiling!
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