The day you are told your child is losing her sight…

Vicky is our 3 year old daughter and she is going blind. A severe congenital disease called Leber Congenital Amaurosis is progressively taking away her sight.  

 

As we launched Through Vicky’s Eyes, one of the most common questions we get asked has been “how did you find out about Vicky’s condition?” So, as painful as it is, we would like to go back a few months ….

 

“Mummy I dropped Teddy on the floor. Where is it? I cannot find it”.

 

It is December 2015, Vicky is 2 years old. It is Xmas, we are with the family. Since couple of weeks she is looking at things sideways, she would stand in front of the TV and turn her head on the left.

I have this picture in my mind of her sitting on the carpet at the granny’s house and getting objects really close to her to see them.  It is also the first time we go with her to the cinema. In the dark room she struggles to find her chair…we cannot imagine what the reality is.

 

In the evening/ morning when her room is dark she is very frightened. She looks for my hand to guide her in the dimlight…I notice these things but I think is probably nothing…she is just a small kid, her sight is still developing right?

“Mummy I am afraid. It is all dark.” “Mummy I cannot see anything

 

At the doctor appointments they also notice an involuntary movement of the eye called nystagmus: her left eye is always dancing up and down like if she is not able to focus. We realize she is struggling with simple tasks…if something falls on the floor she is not able to locate it and pick it up. She bumps into open kitchen cabinet doors.

 

We are recommended a series of test, including a Brain MRI to rule out more serious complications. The Brain MRI fortunately comes out negative.

 

ERG was the next test. It measured the response of the retina to light. Vicky had electrodes attached to her head and forehead. She was sitting down in a dark room on my lap, watching …peppa pig! She loved it. From time to time, a flash appeared and the electrodes measured the response of the retina to these flashes. I could tell something was wrong. The two doctors behind the monitor did not tell me anything though…it was only 2 days after that I met again with the ophthalmologist. She asked me to get into her room and to sit down. I was 6 month pregnant with my son at the time. Vicky was busy (as always) playing with some toys. The ophthalmologist said “the ERG is saying there is something wrong with her eyes”. My heart plummet…I do not remember what she said afterwards …she did not understand why Vicky seems to see still “ok”, she talked about retina degeneration. She talked about her losing her sight. For half of the conversation, I thought she was talking about only 1 eye, the left eye with nystagmus. So I asked the question “are you talking about the left eye only?” hoping with all my heart that this was the case. But she said “Unfortunately not. It is on both eyes”. I do not remember anything of what happened next. I remember the ophthalmologist asking me if I was ok….to sit down…I remember getting home and bursting into tears…

We saw many doctors in the following weeks. At last, a professor who specializes in retina conditions recommended us to pursue genetic testing. After few months of waiting, he confirmed the diagnosis of retinal degeneration. We have been able to pinpoint exactly the gene causing her condition. He said “the condition is going to progress and there is nothing you can do now to stop it”. Those words weighted like heavy stones.

I was just about to accept that Vicky had poor sight…but how to deal with the fact that she is going to lose it completely? The following months have been close to hell: shock, denial,  disbelief. I still struggle to talk about all negative thoughts we had.

We have a come long way from those early weeks of the diagnosis. We now know more about her condition. We have come to know a little more the world of sight impairment. We are slowly coming closer to the idea that she can have a joyful and fulfilling life despite her sight impairment.

We also know that there are other kids like Vicky. We are not alone in this fight. There is hope to find a cure to stop or, at least, slow down the progression of the disease in the future.

Can you help us? Our mission is simple…yet so ambitious. Through Vicky’s Eyes is our journey to let her see as many things as we can. And while we do that, raise money to support researchers. We need your help to give hope to Vicky and other kids like her: the hope to see the world a little longer.

 

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