Golden Times September 2016

The Crunden
family from
Lewes have
thanked
Chestnut Tree
children’s
hospice for
their continued
support.
Theo Crunden is three years old.
He was starved of oxygen at birth
and suffered a brain injury as a
result. He now has quadriplegic
cerebral palsy, uncontrolled
epilepsy, secondary dystonia, and is
registered as blind.
Theo’s mum, Lucy, has spoken
about the daily challenges Theo and
his family face.
“Theo is up several times a night;
he can’t turn himself and gets
uncomfortable, so we need to help
him.” Lucy explains, “We are up
early as it takes around three hours
to get Theo ready. He is on nine
different types of medication at the
moment, and the day starts with his
first dose, which has to be given to
him slowly through his feeding tube,
followed by his breakfast. Then we
Family thanks local children’s hospice for their support
dress Theo, which is a challenge as
he is floppy but spasms frequently
If Theo is not at nursery, we
normally start the morning with
a physiotherapy or speech and
language programme, followed with
some sort of appointment. Then we
repeat the process of medication
and lunch, a small sleep in the
afternoon, more medication, dinner,
and eventually helping him get off
to sleep.
We first heard about Chestnut
Tree through our paediatrician,
we were struggling at home, we
weren’t sleeping and things were
just getting too much. When they
first recommended a hospice I was
shocked but my mind was soon put
to rest when one of the Chestnut
nurses, Laura, explained how they
could help, and my perception was
completely altered.
The first time we visited Chestnut
Tree House we thought it was
absolutely incredible, the facilities
are phenomenal. We find it really
hard to find somewhere for Theo
to enjoy, he needs stimulation
and Chestnut provides that. What
makes it even better is that we can
do this as a family - Theo’s little
sister Mabel can also join in and
enjoy playing with her brother. The
members of staff are also amazing
As well as being able to have
weekend stays and use the day care
facilities at Chestnut Tree House,
we also plan to start using Chestnut
Tree’s community team so that we
can receive care at home.
I would like to say a huge thank you
to Chestnut Tree. We are so lucky
to be able to go there, they are
absolutely incredible.”
To find out more about Chestnut
Tree and the care that they provide
in East Sussex, please visit their
website www.chestnut-tree-house.
org.uk/handsup.
Local family feature in charity film
Chestnut Tree children’s hospice
has recently launched a film
featuring a family from Barcombe.
The film aims to raise awareness
of the charity in East Sussex, and
the care that they can provide in
children’s own homes.
The Lundin family have been cared
for by the Sussex-based charity
since 2011 when they were seeking
respite care for their youngest
child.
Dad Jason explains “Eva was born
13 weeks early, not breathing, and
spent the first 108 days of her life
in hospital. She was tiny but she
fought hard, she is now almost six
years old and is a loving girl with
Cerebral Palsy and chronic lung
disease. She has
come a long way
since those early
days, but she
is still highly
dependent
on me and
her mum for
all of her needs.
She cannot walk unaided, her
weak chest means she is often
dependent on oxygen, she is fed by
a tube and she cannot speak to us.
Of course, she communicates in
her own way, and has even learnt a
few signs, but caring for her is still
hugely demanding.”
The family access a range of
services at Chestnut Tree. A nurse
visits regularly to take care of
Eva whilst Jason and Mel spend
some quality time together, and
with Eva’s brother George. “It’s
wonderful” Jason says, “to start
with, the visits from the Chestnut
Tree Nurse gave us time to get
everyday tasks done, but now we
use it as precious time for Mel and
I to spend as a couple, which is
really invaluable. And during the
school holidays we try to use our
visits to spend some time with
George, doing the kinds of things
that aren’t easy with Eva.”
Chestnut Tree cares for 300
children and their families across
Sussex and never charges for its
care. It costs well over £3.5 million
every year to offer these services
and less than 7% of its funding
comes from central government,
meaning it relies heavily on the
generosity of the local community.
“We are so proud of Eva and
George and will treasure this film
forever. Please, please tell as many
people as you can about it - like,
share, tweet, retweet, comment –
and help Chestnut Tree reach more
children and families like us that
need them. Thank you so much!”
You can see Eva’s film on www.
chestnut-tree-house.org.uk/
handsup, by liking Chestnut Tree
House on Facebook, or by following
@HandsUpToHelp.
16
Find us online at www.goldentimes.co.uk