Autumn and Winter Newsletter 2023

Your news
AUTUMN AND WINTER 2023

Inside...
Page 2 Mum, Hannah, tells
us baby Maisie’s story
Page 4 Bereavement support
for our families
Page 4 Name the bear
competition!
Page 5 Jenny talks about
being a volunteer
Page 6 Be part of an
amazing challenge!
Page 7 Local family
business celebrates
supporting CHSW
Page 8 Life is always better
with friends!
Page 8 Make a Splash this
winter for CHSW
Page 9 Our online Christmas
shop is open
Page 9 Join our
Nursing Team
Page 10 Upcoming
extraordinary events
Thank you so much for taking such amazing care of us. You have
managed to take us from dark places at times and made us laugh,
smile and feel happy again. Starting to come here was one of the
best decisions ever! It really has been our ‘happy place.’
Family who visits Children’s Hospice South West

A very warm welcome
2023 has been an incredibly busy year so far for all 3 of our hospice
teams with many of our children, young people and families
enjoying stays and day visits, utilising our wonderful facilities,
whether it be our sensory rooms, hydrotherapy pools, taking part in
Music Therapy sessions or enjoying our beautiful outdoor spaces.
We also continue our much-valued
support to our bereaved families, we
are a listening ear at the end of the
phone, we have home and hospice
visits, and special events for families
to meet and share experiences. In
this edition, you can read about our
bereavement support as well as meet
1 family who are remembering their
daughter and fundraising for Children’s
Hospice South West (CHSW).
We embarked on a Nurse Recruitment
Campaign and this continues with
open days at our hospices, showcasing
life as part of our Care Team. Are you
a nurse or do you know a nurse who
might want to find out more about
the vital work they do here? Then
please take a look at page 9.
It has also been a busy year for
our fundraising. In particular, it has
been a joy to see so many volunteer
Friends Groups staging local events
right across the South West. Take a
look at page 8 for more information
on how you could be part of the fun.
Whatever part you play, whether you
volunteer, fundraise, or support our
shops with donations, thank you, and
I hope you enjoy our newsletter.
With my best wishes,
Eddie Farwell MBE
Co-Founder and Chief Executive
Children’s Hospice South West
Page 1

Mum, Hannah, tells us
baby Maisie’s story
When Maisie was born, Hannah and Ben from Tresillian,
Cornwall, were overjoyed at the arrival of their daughter.
After 10 normal days with their newborn, Hannah noticed
Maisie was breathing rapidly. She was later diagnosed with
a heart condition, mitochondrial disease, which would
change the course of their lives forever.
Hannah says, “Maisie was operated on and initially
it seemed to be all sorted. At the time we thought it
was the worst thing ever and thank goodness that
it’s all done.” But during follow-up appointments, the
complexity of Maisie’s condition was discovered. “We
weren’t really given any information initially, they just said
she needed more tests. We were quite ignorant to what
was going on, but we really hoped that whatever it was,
it could be sorted out. Then a doctor told us that Maisie
wouldn’t be able to have a heart transplant due to her
condition. I remember Ben asking her the question, how
long do you think her heart could cope? She said a year.
Page 2
When we told our friends and family they were in utter
disbelief. Maisie looked like a really healthy baby. It was a
confusing time for everyone. Sometimes I thought I should
be more positive that she was going to be fine, and then on the

other hand I knew we had to prepare
ourselves for the worst.”
When on a visit to see family, Hannah
realised that Maisie was not doing
well, “Her hands and her feet had
started to go a bit blue, which was a
sign of her heart in distress. We were
frequently visiting the hospital. I just
knew she wasn’t well at all.” It was
during that time that Hannah made a
self-referral to Little Harbour.
Maisie died just shy of 6 months old.
Hannah said, “The day after, Sam, the
Head of Care came to visit us. The
team helped us with any questions
and helped us explain things to our
son Lowen.”
Little Harbour quickly became a
support system for the family. Lowen
could play safely and happily, while
Hannah and Ben discussed Maisie’s
funeral arrangements. The family
spent a day decorating Maisie’s coffin
next to the memory tree and the
members of the Care Team supported
the family at Maisie’s funeral.
Hannah shared, “Lowen loves it,
he’s always asking to visit Little
Harbour. Theo, our new baby, comes
with us too, and I go to a lot of the
mum’s groups. It’s really nice to have
somewhere to go, to be surrounded
by people that get it.”
Hannah and her family will be
speaking at this year’s Moonlight
Memory Walk at The Lost Gardens
of Heligan, walking alongside other
families who are remembering their
loved ones that evening.
Despite the years passing, we are still so very proud of
Maisie and she is so very loved and missed by us and all of
the wider family and this will forever be true. The Moonlight
Memory Walk this year will mark almost 5 years since
Maisie’s death and it will be an incredible way to remember
her. We have met so many wonderful families through Little
Harbour who have been through so much and we are truly
honoured to be a part of such a special night.
Find out more about the bereavement service we offer our families on the next page
Page 3

Bereavement
support for
our families
Starborn is a very special temperature
controlled room in each hospice where
children can lie after their death. It is a
very private space for families to say their
goodbyes. The room is comforting and
peaceful and can be personalised for each
child by being filled with their most loved
toys, or with their favourite music playing.
Sibling support at each hospice provides
dedicated support and care to the
brothers and sisters of children and young
people with life-limiting conditions.
This service reflects the needs of brothers
and sisters and can range from an arts
and craft session to sibling weekends.
Bereavement support is provided for
the whole family. This can include group
sessions for parents, bereavement stays
at our hospices and opportunities to join
remembering days.
Ongoing contact provides a listening
ear and support in between any
bereavement sessions and contact.
Name the bear
competition!
Our bear mascot needs a name, and you can help!
Make bear-naming history and the lucky winner
will win a dryrobe® Advance of their choice.
Enter online today! www.chsw.org.uk/mascot
Page 4
Competition possible with thanks to our supporters dryrobe®. Closing
date: midday on Wednesday 22 November. Terms and conditions apply.

Jenny talks about being a volunteer
How long have you been volunteering?
I have volunteered most of my adult life for a number of
organisations and I have been volunteering with Charlton
Farm for over 12 years now! I feel it gives balance to
my life, especially now as I’m retired, and my children
lead their own lives. I think CHSW is such a wonderful
organisation, to be able to do my bit brings me an added
sense of purpose and enjoyment. I find it very uplifting to
be as involved as I am.
What sums
up your volunteering
time with CHSW?
It leaves a
fingerprint
on your
heart!
How did you get into
volunteering?
I came into it by accident, picked up a
flyer in Boots and it went from there.
Tell us about how you volunteer?
I enjoy marshalling at events, helping out on
stands at shows, it could be arts and crafts
stalls, or helping to spread the word, and of
course I bake cakes that are really popular with
our supporters and are sold on our cake stalls
to help raise money for CHSW. I have also been
volunteering in the kitchen at Charlton Farm for 8 years,
and I have been involved with the open days.
What would you say to anyone thinking about getting involved?
Do not hesitate, go for it, even take a friend with you if you want to.
Every hour each volunteer
gives makes such a difference
to families supported by
CHSW. To find out more call
your local hospice or visit
www.chsw.org.uk/volunteer
Page 5

Be part of an amazing challenge!
Friday 17 to Sunday 19 May 2024
www.chsw.org.uk/hike
Have you ever wanted to walk the South West Coast Path? In 2024 you can
start your coast path challenge with us, while raising vital funds for children
and young people living with life-limiting conditions and their families.
The Incredible Hike is a guided 3 day walk totalling 60 miles of the coast path
from Minehead to Croyde. Every year, we’ll pick up where we left off, walking
to complete the South West Coast Path. Find out more: www.chsw.org.uk/hike
Page 6
Please help turn outgrown and preloved toys, puzzles and games into smiles at
your local CHSW shop. Find your nearest shop by visiting www.chsw.org.uk/shops
What you can do as
a Corporate Partner
Sponsor one of our events
Take on our £50 challenge
Join our Business Club
Sponsor a nurse
Fundraise at work
Make CHSW your
charity of the year
Volunteer for us
Promote payroll giving
Gifts in kind
Match funding
Find out more by visiting
www.chsw.org.uk/corporate
To all our charity
partners for
your continued
support

Local family business
celebrates supporting CHSW
Adam Lerwill, Director from Surf Bay Leisure, shares why they
chose to support CHSW
“Surf Bay Leisure is a family-owned
static caravan and lodge business and
we also have 4 holiday parks across
Devon and Cornwall. We wanted to
support a South West charity and
Children’s Hospice South West was
unanimously voted for by the team
as they cover the same area as us and
the work they do is incredible.
We heard that they were looking
for riders to sign up to their Ride for
Precious Lives event and there are
several keen cyclists at head office,
so we decided to sign up and that’s
where our journey with the charity
started. We cycled
over 200 miles
with lots of
other cyclists
and visited the
3 children’s hospices,
over 3 days. We
were pleased to
be able to raise
more than
£4,000 through
sponsorship.
3 words to
describe the
partnership?
Positive,
rewarding,
fun.
Last year we were asked
if we would be interested in
sponsoring one of their remembrance
events, Moonlight Memory Walk.
We were happy to support the charity
again and help cover some of the
costs of running such a big event.
We will be sponsoring Moonlight
Memory Walk again this year too.”
Ride for Precious Lives 2024 is from Friday 12 to Sunday 14 July and places
sell out fast so don’t delay. Sign up today www.chsw.org.uk/ride
Page 7

Life is always better with friends!
Our Friends Groups made such an impact this spring and summer by holding
bucket collections, hosting coffee mornings and attending events and talks
on our behalf. But what is a CHSW Friends Group?
Well, it’s a group of people who want to support CHSW and who get
together on a regular basis to have fun while raising vital funds for
our wonderful hospices.
If you think you would like to join an existing group or start your own
Friends Group, we would love to hear from you! Please contact your local
children’s hospice for more information or visit www.chsw.org.uk/friends
Make a
Splash this
Winter for
CHSW!
Will you be taking part in a Christmas Day
or New Years Day dip this winter?
If so, why not turn your chilly
challenge into a South West Splash
FUN-raiser for short and precious
lives across the South West.
Find out more by visiting
www.chsw.org.uk/splash
Page 8
Our shops often have party wear and fancy dress for the festive season, find you local store www.chsw.org.uk/shops

Our online
Christmas
shop is open
For Christmas cards, diaries
and more, browse our online
shop and get organised for
the festive period.
We’ve got a variety of
wonderful gifts available to
purchase including Lottery
vouchers and memory stars,
so for all your gift-giving
needs please visit
www.chsw.org.uk/christmas
We’re
hiring!
Join our
Nursing Team
Are you looking for your next nursing
experience with time to care and to
develop your clinical skills, while feeling
valued as part of a supportive team?
There has never been a better time to
join us as we embark on our ambitious
plans for the growth and development
of children’s hospice care.
Our hospices in Devon, North Somerset
and Cornwall have been providing
expert, individualised care to support
children, young people and their
families for more than 30 years. We’re
hoping to reach even more families in
2023 and are currently recruiting nurses
from a variety of different settings and
backgrounds at each of our hospices.
If you want to make a difference every single day, sign up for job email alerts
and apply - we would love to hear from you! www.chsw.org.uk/nursejobs
Page 9

Upcoming extraordinary events
Flat routes taking in the scenery of
the estuary along the Tarka Trail
Sunday 1 October
www.chsw.org.uk/barnstaplemarathon
www.chsw.org.uk
enquiries@chsw.org.uk
A special evening to
remember your loved ones
Saturday 7 October,
Salt House Fields, Clevedon
Saturday 11 November,
The Lost Gardens of Heligan, Cornwall
www.chsw.org.uk/moonlight
Redlands Road, Fremington, Barnstaple,
Devon EX31 2PZ 01271 325 270
Charlton Drive, Wraxall, North Somerset
BS48 1PE 01275 866 600
Page 10
Get in the
water and
make a Splash!
Any water based activity
could be part of a fundraiser
www.chsw.org.uk/splash
Save the festive date!
Sunday 3 December,
The Eden Project, Cornwall
and Charlton Farm, near Bristol
www.chsw.org.uk/santas
For our full calendar of events
visit www.chsw.org.uk/events
Porthpean Road, Porthpean, St Austell,
Cornwall PL26 6AZ 01726 871 800