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