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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  Grace Knowles was born on the 15th April 2004 in Blackburn with Darwen UK.

She was diagnosed with Cockayne Syndrome type 2 after a skin biopsy aged 15month.
Grace had many Cockayne syndrome symptoms, including: Having difficulties feeding, she had a NG tube from an early age, and then went on to have a gastrostomy and was nil by mouth. UV sensitivity, meaning she burnt easily in any sunlight. Grace had microcephaly, neurodevelopment delay, short stature, cold feet, sleeping with eyes half open, chronic vomiting, progressive loss of sight and stiff joints.
Grace never grew bigger than a year old baby, she was never able to speak, and was restricted in movement never being able to sit up, crawl or walk.
Despite all of this Grace was an incredibly bright girl. She constantly smiled and laughed, she would pout her lips when being given kisses, and snore very loudly through the night!

Grace loved being around people, and everyone who met her fell in love! Grace’s favourite things included helium balloons, beanbags, colourful lights, her three loving sisters and two protective brothers, The X factor, being snuggled and being around her Amy and Friends family!

Grace spent every day of her life making others happy, and on the 4th April 2009 age 4 I watched as she fell asleep peacefully for the last time in her Daddy’s arms. She was buried 11 days later on what would have been her 5th birthday.
When we think of Grace my family smile, we remember all the love she had to share, all the wisdom she brought and all the wonderful memories we will treasure forever!!

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