12 | Cycling World
Th e Story of How a Father of Two
Supports Great Ormond Street Hospital
Children’s Charity
In September 2011, husband and wife Darren and Sam Parr from
Kent were excited about the birth of their fi rst child, but they had no
idea what would lie ahead once Amy was born.
Sam needed an emergency caesarean at her local hospital, but sadly
Amy was not breathing when she was born – her dad Darren burst
into tears while Sam knew something was seriously wrong as she
couldn’t hear any crying.
Aft er eight minutes of resuscitation, Amy fi nally took a breath, but
was completely fl oppy and couldn’t move anything but her eyes. She
was rushed in a travel incubator to the special care baby unit and kept
in isolation for 24 hours while doctors ran tests. Sam was scared to see
her because she knew the reality would hit that they couldn’t take her
home, she says: “You never think something like this will happen to
your baby. It’s such a shock. All I wanted to do was give her a cuddle.”
Amy’s local hospital transferred her by ambulance to Great Ormond
Street Hospital when Amy was only four weeks old for specialist care.
Both Darren and Sam remember thinking: “I’d heard of GOSH as
somewhere where the most seriously ill children go, but you never
imagine you own child will have to go there.” Darren and Sam made
their own way to London to be with their daughter.
Doctors at GOSH quickly diagnosed Amy with a rare neurological
disease, chronic infl ammatory demyelinating polyneuropathy (CIDP).
Having recognised the condition quickly, and with the right treatment
of this incredibly rare condition Sam and Darren clung to hope that
the treatment might give Amy some movement, even if it just helped
her move her arms. Th roughout Amy’s treatment, she always had a
litt le smile on her face, and that gave Sam and Darren the strength to
carry on.
About chronic infl ammatory
demyelinating polyneuropathy (CIDP)
• Chronic infl ammatory demyelinating
polyneuropathy (CIDP) is a neurological
disorder, which means it aff ects the nerves
in the body.
• CIDP is caused by damage to the myelin sheath
(which wraps around nerves to protect them).
• As a result, the nerves are damaged and this
causes weakness and paralysis.
• Th e condition is rare, and is more usually found
in young adults.
• Symptoms include tingling or numbness
and weakness.
Even aft er having been told that Amy was unlikely to reach her
fi rst birthday, and could remain completely paralysed – they were
devastated, having brought a child into the world, they didn’t know if
she would live. When they walked into the reception area they were
fi lled with anxiety, but they quickly discovered that the care at GOSH
is phenomenal, and realised they were in the best place possible for
Amy. Even at such an incredibly tough time, they both started to feel
at ease and hopeful.”
It was an extremely tough time for Darren and Sam, travelling to
London to be with their daughter. Aft er six weeks of care and fi ve
days of treatment, Amy was allowed to go home, but whilst having
a physiotherapy session at home, Sam encountered what could only
be described as one of the happiest moments of her life, when Amy
moved for the fi rst time.