The World Through Vicky’s Eyes

How many times have you enjoyed the sunset on the sea? Or the wonderful emotion of seeing a loved one smiling to you? How beautiful is the immaculate snow on the mountain, or the colors of hundreds of butterflies in the air? Imagine to be told you will lose your sight in a few years. How would you feel? What would you do?

 

Vicky is almost 4 and she is losing her sight due to a condition called Leber Congenital Amaurosis. In as little as few years she might not be able to see again. Never again.

 

But…What is Through Vicky’s Eyes? Where did the idea come from?

The weeks and months after the diagnosis have been very very difficult. We struggled to find the meaning of what was happening.  I would close my eyes and see nothing. I found myself looking outside the window and just cry.

I could only think at all the things she will not be able to do, see, experience. Think at how difficult her life will be… ”.

Many things and many people helped us make it through the very rough waters . We could have continued to live in denial. Vicky still has some sight left…so it would be much easier not to worry for now. Right? Or we could have given up to the “inevitable” progression. “There is currently no cure” we were told.

 

Instead, we started to think that we should DO something. If there is hope of slowing down the progression we have to invest all our efforts to pursue that. At all costs. We talked with researchers, participated to conferences. We looked for other patients with the same condition. We talked with people and associations around the world from South Africa to Taiwan, from Germany to Canada. Our mission became clearer and clearer. We will do everything we can . We owe it to her. We owe it to us.

Do everything we can

But what does “do everything we can ” mean? Through Vicky’s Eyes has (at least ;-)) 3 goals.

First, it is our journey to support Vicky’s development despite her sight impairment. It is about preparing her physically and emotionally.  It is fighting to get the right level of support at school, it is finding the right social environment where she can thrive, it is proactively introducing her to technology and Braille. It is about making the world a better place for her. As parents, this is what you do. You invest all your effort in  fighting for a better life for your kids.

 

Second, Through Vicky’s Eyes is our goal to show her as many things as possible while she can still see. Very simple…yet so ambitious.  It is about showing Vicky new cities and new countries during our family travels…but it goes well beyond that.  It means taking every opportunity to show her the small beautiful things in this world. It means taking the time to stop to see a little bee on a flower while rushing to school in the morning, It means going to a very dark place on the mountain hoping she can see the full moon once in her lifetime. It means being on cloud 9 when she is able to glimpse a little ladybird on her hand.  It means appreciating every thing like somebody that is seeing them for the first and, maybe, the last time. Somebody like Vicky.

 

Third, “do everything we can do ” means pursuing the research of a cure for Vicky’s condition. This is where the idea of Through Vicky’s Eyes came up. Can we fight for a cure? By partnering with the other families, we know there is hope. We can actually make a concrete difference by supporting the research and work to slow down the progression of the condition. But we need to act fast. Everybody we talked to seemed very moved by the story. A lot of people offered to help us. Can we get people to support us? Can our aspiration of helping kids see for longer become the aspiration of many people?

 

See the world is our aspiration. Find a cure is our hope.

So, here we are. Sharing with you everything Vicky will be able to see. Her emotions, her fears, our good and bad days. And asking you to support our journey so that kids like Vicky can see the world a little longer.

 

When we are old we want to be able to look back and say:

 

“We have done everything we can to help kids see for longer – Will you help us?

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