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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  When Danny was born at 3:10am, he was the most gorgeous little boy perfect in every way.

The next morning, we were told we could take him home at 12pm just as soon as he'd had his routine eye and hearing test.

Three days later we were still waiting to go home !

Now Danny wears hearing aids and after 3 eye operations, wears glasses.

Not the greatest start to his life, but he is an exceptionally happy little boy.
He's 19 months old now but he looks like a 4 or 5 month old baby. He can't sit up yet, can't talk and just isn't growing at all, but he's our special little boy and we all love him to bits.

We had no idea what was wrong with him until someone suggested he might have Cockayne Syndrome. We looked it up on the internet and as soon as we read about the symptoms, we thought maybe he could have CS but as soon as we saw the photos of the other kids with CS we knew, we just knew !

We contacted Jayne Hughes and she was brilliant and so helpful. Within 5 or 6 weeks we had a definite diagnosis which was such a relief and a shock all at once.

We have learned that Danny has only got maybe 5 years to live so we make the most of him every day.

As you can see - Danny is a stunner and if you get to meet him - you'll love him too !

Love Pete, Terri and KC/DC. ( Keightley Carhys & Daniel Craig ! )

   
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