Sue and Nick Pye were a happy, loving couple. They were married
in September 1988 and planned to start a family within two years.
Sadly, they discovered they could not have children of their own,
so decided to adopt. In December 1995 a six month old baby girl was
placed with them and they were overjoyed. Their family was
complete.
Rebecca was a lovely little girl, whose radiant smile captured
the hearts of everyone she met, and her parents doted on her. When
she started school her future looked bright - but then illness
struck.
It was the beginning of a nightmare for the family and a
desperate battle for Rebecca as the medical profession, baffled at
first over her symptoms, eventually arrived at a diagnosis that she
was suffering from a rare disease in which life expectancy was
limited. The news devastated her parents. In a short time, their
daughter deteriorated to the point where she was left fighting for
her life and doctors told Sue and Nick to prepare themselves for
the worst.
Rebecca was suffering from Leigh Syndrome, a disease noted for
its degradation in one's ability to control movements caused by
lesions on the brain stem.
Supported by family and friends, Sue and Nick kept vigil at
Alder Hey Children's Hospital, Liverpool, for three months as their
little girl, just four and a half, fought for survival. But what
doctors hadn't bargained for was Rebecca's character and spirit.
She clung to life, often being kept alive by a ventilator, but she
fought the incurable disease sufficiently to return home.
Despite many setbacks Rebecca continued to confound medical
opinion and live life, albeit with restrictions, to the full. Hers
is an incredible and inspirational story . . .
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