Lilya

Lilya is our little girl who has Leber's Congenital Amaurosis (LCA).

She is our third child with such an outgoing personality, she is one in a million!

LCA does not define her.

When Lilya was a young baby, we noticed that she had nystagmus and didn't take much notice of her surroundings.  People walking straight towards her would result in her being shocked at their presence in front of her. We didn't realise that she couldn't see them approaching.

So after numerous trips to the hospital, MRI scans and sensors stuck to her head whilst pushing her head into a box as she had images flashed at her, tests confirmed a genetic condition known as Leber's Congenital Amaurosis. 

Leber's Congenital Amaurosis is an inherited eye disease that has to be passed on by both parents.  We both felt guilty for passing this onto our beautiful little baby girl but in some ways, took comfort in the fact that both of us had played a part. We had no idea that we both carried the same faulty genes and so being told Lilya would be registered blind came as a huge shock even though we knew there was something wrong quite early on.

We have been on a roller-coaster of emotions from the day of her diagnosis but in the main, when one of us is struggling, the other is strong enough to carry us through. We do have the odd occasion when we are both awash with tears.  Thankfully, these occasions are few and far between these days.

Our days are filled with being so proud of her and the way that she deals with things, amazed at the way she makes us see things in a different way just by how she describes it to us.

We did get a lot of support from our local vision impairment team, who taught us how to help Lilya, as well as giving Lilya basic tools to help her be as independent as possible in her everyday life.

Our next concern was how she would be educated. 

With the support of the local vision impairment team, who have worked with Lilya since she was first diagnosed, Lilya was able to go to the same nursery and school as her brother and sister just after she turned 3.

As a teacher myself, I always believed I would be able to educate my own children quite easily at home before they started school and support them once they had started.

Our Braille for little fingers flash cards were designed to allow our daughter to familiarise herself with the Braille alphabet in much the same way as we had used large font flash cards for her brother and sister.

Lilya loves to get out her little box of cards, she gives a delighted little squeal when she tells us the letter she is holding. She has now become the teacher, in that she holds the card and asks us what the letter is.

As a family, we always wanted Lilya to see braille as a normal way to read and write.

We believe our flash cards have been a fantastic way to introduce braille to our daughter.

She is happy to use a Brailler at school, her classroom peers all want to have a go too. Braille is in our lives and our little girl is proud to use it, although at first, she thought every bit of braille said her name. Bless her!

 

Lilya is an inspiration. Lilya is our inspiration.

 

We have started our journey, we wish you all the success we have had so far, as you start your journey into braille with your child.