Amy and Friends - Cockayne Syndrome SupportAmy and Friends - Cockayne Syndrome Support
Welcome to Amy and Friends -
Cockayne Syndrome Support
Patron - Lord Ward-Atherton of
Witley & Hurcott
Who are Amy
and Friends?
Our group was
formed to facilitate the support of
children and families suffering from
Cockayne Syndrome (CS) in the UK.
Our group consists of CS sufferers,
their parents and siblings, their
extended families, family friends,
representatives from medical
disciplines, non medical therapists
and other interested parties. We
organise meetings for group members
to share experiences, knowledge and
to gain support from each other. We
assist families in attending other
support opportunities and taking
part in CS research programmes.
Sufferers and families are able to
meet others in similar situations to
themselves, perhaps for the first
time ever. This makes them feel less
isolated and helps them to learn
more about this illness. Families
who have lost children can meet with
someone who has shared their
experience.
For those of you
who are unfamiliar with Cockayne
Syndrome – where shall we start ....
CS is a premature ageing disorder
that leads to a shortened life
expectancy. There are varying
degrees of this syndrome and there
are types I, II and III.
Each child has a look of one another
regardless of the type and each one
has a loving, happy nature. Amy and
her friends reach out to your heart,
capture it and you will never forget
that you have met them and they you.
Having spoken to parents of this
terrible illness it is apparent that
each one is filled with sorrow at a
life that should have been, at
misunderstanding from the world
around us, for some help that never
comes but for all our children bring
meaning to life and the simple joy
that is found in a smile, a touch,
maybe at step taken and that they
were brought to us for even a short
while.
This is Amy and
Friends world, Amy and Friends lives
and WOW what lives they’ve had! So
share it with us and understand our
Cockayne world.
A big congratulations to Amy who won
the Against all Odds award from The
Morgan Foundation!☺
