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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  Brooke was born a week late on the 5th June 2008

Weighing 5 pounds 6oz, her head circumference was small 30cm! From day one Brookes feeding was up and down and she didn’t gain much weight an seemed very unsettled! she got a NG tube and special milk at 5months old which really helped, however she was very sick and got diagnosed at first with a CMV (cytomegalo virus).

Her eyes started rooming from side to side we found out she had cataracts and also a retinal problem, she had her cataracts removed and began wearing glasses and her eyes seemed a lot better. She seemed very happy, her hearing seemed good but was gradually struggling with quiet noises as she was getting older.
Brooke was a very very happy, bubbly little girl, who loved playing with bubbles, balloons, swimming, swings, being pampered i,e hair washed and hairdryer, massages!!!, fairy lights and of course people she was very sociable! She had a big passion for life, never made a fuss and was very brave. Brooke had a peg tube, bad reflux and didn’t like the sun.

She had a skin biopsy at around 18months in Hammersmith hospital London and got diagnosed with Cockayne syndrome, she had suffered a few chest infections so we went for the nissens operation as the sickness wasn’t helping, plus it would be great for her well being! I was slightly apprehensive as it seemed a big op for such a tiny little girl, sadly things didn’t go well due to ulcers that had formed on Brookes bowel, these burst as she wasn’t very mobile. Myself and the doctors were unaware that Brooke even had an ulcer! It was so quick and sudden! (I just would like to put a little warning out there about ulcers so other families are aware, I’m not sure if any other children with CS have had this, or if it was just another rare thing that Brooke had!!) The nissens operation went well but it was too late as the ulcer had formed and perforated and Brooke caught septicemia. Our darling Brooke fell asleep in Addenbrookes in my arms on the 30th June 2010 aged 2 surrounded by our closest family xxx

   
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