insideKENT Magazine Issue 50 - May 2016 | Page 150

CHARITY

CHILDREN’S HOSPICE WEEK
23-30 MAY

Children's Hospice Week is the UK's
only awareness and fundraising week for children
with life-shortening conditions and their families
and the palliative care services that support them.
The theme of the campaign is `Time to Put
Families First’ and the aim of the week is to
improve public understanding of what life is really
like for families caring for seriously ill children. It
will also highlight how precious family time is and
how the wide range of children’s palliative care
services across the UK, such as Demelza Hospice
Care for Children, provide vital support to
thousands of families and help them treasure
their time together.

The family’s first bridge to cross was the discovery
that Hallie, then five months old, was blind.
“We decided it wasn’t the end of the world, we
accepted that and carried on,” recalls Ian. “But
Hallie was often poorly with what we thought
were unrelated problems, and then, just after
she started walking at 14 months, she had a
light fall and broke her arm.”
The diagnosis, when it came, left Ian and Megan
with many unanswered questions. “There’s not
enough known about osteopetrosis,” Ian said.
“But we were told she could die before two, and
that many children do not survive past 10 if they
do not receive treatment.”

Hallie’s story:
“We’ll cross that bridge when we come to it,”
has become a well-worn phrase for Megan and
Ian when applied to the health challenges faced
by their five-year-old daughter, Hallie.
The couple need a good dose of pragmatism to
cope with the many unknowns that come with
a diagnosis of osteopetrosis, a rare and lifelimiting genetic condition that can result in bone
fractures, restricted height, frequent infections,
sight loss and hearing impairment.

Hallie did get the life-saving treatment she needed
– a bone marrow transplant that means her
bones are now healthy, although they will always
be fragile. But her sight cannot be restored, she
remains at risk of recurrent infections which
frequently land her in hospital, and neurological
problems may lie ahead. So the respite care
Hallie receives at Demelza Kent is a huge boost
to the family, including her big brother Logan,
aged eight.
“Hallie loves it there and it is time for us to spend
with Logan,” said Megan. “Usually when he sees

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me packing a bag it’s because Hallie is going
into hospital and he has to go and stay with his
grandparents, so it makes a big difference to
him.
“We can’t leave Hallie with anyone else. Her
grandparents love being with her but her medical
needs are too much for them and they would
be scared to be in charge. To take her
somewhere where the care team know exactly
what they are doing means we can relax.
“Depending on how Hallie feels, sometimes we
all stay at Demelza and sometimes we leave her
overnight and take Logan out to do something
she couldn’t do, like ice skating. He actually likes
it best when we all stay because there is so
much for them to do and he loves it there as
much as she does!”

Demelza is calling on residents in Kent
to think about making time to donate to
Demelza, either financially or their time
in volunteering. They can find out more
by going to www.demelza.org.uk or by
ringing 01795 845288.