Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

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  Pep was born on 28th October 2010, and since then, our life has changed a lot. I would lie if I tell that has been an easy process, but the truth is that Pep has brought more joy and happiness to our days than anything else in the world!

As soon as he was born, Drs. found out that he had hearing loss, and when he was 4 months, they discovered dense and bilateral cataracts in his eyes. That was the start of our story with hospitals and investigations on Pep’s diagnosis.....Through the years, he has been growing slowly, experiencing life with all his energies, playing and laughing with Cląudia, his sister; with our loving family; with friends at school and in our town, traveling around the world with us!
We wouldn’t change a thing of it all, the love he is able to express and share is amazing. Most of the goals he has achieved are due to the force of his love: being able to say his sister’s name, running with his walker at the playground with his friends; standing the hardest moments with a smile in his sweet face.

We knew he had CS a year ago, on November 2015, and at that point, we started the second part of our journey: learning about CS and then, forgetting almost all, to just concentrate on Pep and how he is today.

The third part of the trip is starting now, after meeting our new CS family in Manchester, thanks to Amy and Friends. The experience has blown our hearts, impossible to describe! Sharing a weekend with other kids with CS, meeting other families, getting in touch with doctors who know the syndrome and so much more!

So, we are on the road, traveling with Pep and Cląudia, and all CS families. Let’s enjoy it!.

   
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Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746