On LCA

If you stumbled across our blog by searching for LCA, Lebers Congenital Amaurosis, or "Bones" -  welcome!  Our daughter has LCA.  We hope that you will take the time to visit her website www.finleyfighters.com and www.rdh12.org to learn more about LCA and become informed about this rare childhood eye disorder that causes blindness.

I have a new blog friend - Sonja Biggs.  Her son also has LCA, and she posted something on her blog that I wanted to share.  Since Bones has aired, we have all seen a spike in our blog traffic (which is great) and people searching for LCA.  She had some reassuring words to share, so since a lot of people have been coming to my blog by stumbling across in their search for LCA and Bones, I wanted to share what she said:

"It is a wonderful thing that Leber's Congenital Amaurosis is receiving recognition on a popular TV show called "Bones." As a parent of a child with LCA, there are a few things I want to reassure you of. First of all, LCA is caused by a recessive gene. It is a rare disorder. Parents probably will not even know they are a carrier during the pregnancy because usually no one else in the family has ever had the eye disease. Second, I appreciate the fact the family portrayed had a positive spirit about having a child who may be blind; however, there is no reason a child or adult who is blind cannot be a painter, doctor, musician, teacher, actor, singer, dancer, CEO, engineer, mayor, or whatever the child dreams of having as a vocation. There are so many doors open for children who are blind because of all the technology available today."

I think this is important to remember.  I have been told several times that the only things blind and vision impaired kids can't do is surgery and driving.  Anything else Finley wants to do, she will be able to.  I think it is so true that a diagnosis of LCA is devestating, and life changing-  yes.  A reason to crawl into a hole and limit your child's life?  No.  

Before Finley was diagnosed, and I saw other children who were blind, I used to think that they were so limited.  Living in a dark, quiet world with no hope of ever being independent.  But now that we are here with Finley - leading a life with a vision impaired child, I realize that she is no different today than she was before she was diagnosed.  She is still loving and sweet, and active, and joyful.  She runs, climbs, watches TV, draws, rides a bike.  The only thing that is changed is HOW she does these activities - not IF.  Will she be a basketball star?  No.  Would she have been if she had regular sight?  Probably not.  

Our dreams for Finley haven't changed.  She can still have dreams and aspirations just like anyone else.  Right now - she wants to be a skeleton, so......you know.  LCA is just a part of her life now.  Just a little something extra she needs to deal with to get to her goal.  We still have the goal that when she turns 18, she will go to college, get a job, and move out of our house.  Just like any other kids.

Within the last two years, we have gotten to know many wonderful families with vision impaired kids - with LCA and without - and we have had a chance to learn from them.  And many of these families have teenage children and adult children, and they are thriving (one is doing a PH.D program at Johns Hopkins) and are independent.

So even though we are still filled with heartache about what is happening to Finley, the heartache has lessened with time.  We are in a place now where we feel confident about her future and what we need to do to help her understand that no matter what, she can do just about anything she wants to in life.

For all of you who know someone with LCA - knowledge is power.  Spread the word about what LCA is.  Educate the world about the possibilities children still have with this diagnosis.  We don't want people to be afraid if their child is diagnosed.  We want them to know that they have people they can turn to - that there are many people there to help, to guide, to empower.  Tell them about Finley, or the person you know with LCA.  Show them her picture.  Share her story.  Tell them that the tiny baby they have will smile and laugh, and enjoy life just as much as they do.

So GO!!!!!