Oh how we love Lucy! She is the just-turned-six year old of our daughter Shawni. Having a very rare syndrome called Bardet-Biedl hasn’t held her back one bit…so far. I know that we may be just a tiitch prejudiced but we think she is a gifted artist. In fact we are quite sure that she may see things that we don’t see because of her syndrome, which affects what comes through those “magic markers” to the paper in front of her.
The problem is that doctors are telling us that unless research can find a way to stop it, she will probably lose her sight sometime between the ages of nine and fiifteen. We are fighting in every way we can to support research to save her sight and there are possibilities, but we can’t plan on it. Her night vision has already deteriorated substantially. Those precious eyes may dim within a few years.
Here is what her mother wrote as she was preparing to participate in a Vision Walk, an annual event held each year in most states across the nation to support The Foundation Fighting Blindness.:
“Every so often I get smacked in the face with the reality that like it or not, Lucy’s vision is deteriorating.
It hits me like a ton of bricks.
The latest realization was when she told Dave a while ago in a sing-songy voice: “When it’s the daytime my eyes are blue, but when it’s night-time they turn black.”
My heart aches to think that some day she may not be able to see the colors she makes her beautiful art with.”
So here and now is crucial! And art is definitely her thing for now. What she sees now will be SO important later. She went through a “pointillism” phase last year that was fascinating . For a look at what came out of her mind through her fingers when she was five, go to Shawni’s very popular blog called 71 Toes here.
Lucy and her two older sisters spent a week with us this summer while her parents and two older siblings went on a humanitarian expedition to India. She pretty much turned out reams of artwork every day. It seems that she is into a BIG color stage a the moment. See how she is evolving below:
The crown and rainbow below as well as the picture above show that she somehow has in innate sense of the artist’s color wheel that indicates which colors are complimentary….
Occasionally she decides to go with momo-color….
Note the “underling” flowers in shapes, the cloud and the two signature dots on the ‘main flower’s petals below. Amazing1
What a delight it is to see that all her pictures create a feeling of happiness which is typical of this adorable child..
Strides are being made to slow the process of the deterioration of her eyes which is called retinitis pingmentosa. But how soon that help will come is unknown. Shawni is on the National BBS board of directors which includes a lot of great parents whose children are affected with BBS and who are working hard to speed up the process of finding a way to stop the deterioration.
Who knows where this gift will go in the years to come. We hope and we pray that Lucy will be creating art for many, many years.
For more information and thoughts from Shawni about having a child with a syndrome go to The I Love Lucy Project here.