Autumn and Winter 2021

Autumn
and
Winter
NEWSLETTER 2021

Inside...
In this autumn and winter
newsletter we say a huge thank
you to everyone who continues
to help make a difference to
families across the South West
in our 30th Anniversary year.
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An update from our
Director of Care
You're incredible!
Thank you
Little Phoebe's story
Some dates for
your diary...
Having an autumn
clear out?
Raise a Smile
weekly lottery
Page 10 Christmas
is coming...
A very special visit from our Royal
Patron HRH The Duchess of Cornwall
Read more about her visit at www.chsw.org.uk/royalvisit

A very warm welcome
Welcome to our latest newsletter. In this edition, we want to share
with you some of the events and celebrations that have taken place
so far across the region to celebrate our 30th Anniversary year.
Notably, we want to share a very special
event from 21 July; we were absolutely
delighted to welcome our Royal Patron
HRH The Duchess of Cornwall to our Little
Bridge House hospice in North Devon.
After a very challenging 18 months,
it was simply wonderful to welcome the
Duchess. She enjoyed a tour of our hospice
and gardens, meeting staff and families
along the way, followed by a tree planting
ceremony in the gardens to celebrate
the visit and our 30th Anniversary. The
event was attended by a selection of key
supporters from 30 years of fundraising
in the local area. COVID-19 restrictions
meant the number had to be limited to 30.
As you can also see within this newsletter,
you, our valued supporters continue to
run, jump, swim and hula hoop, raising
funds to support children and their families.
I would like to thank you for your continued
fundraising and messages of support
especially in the recent challenging months
and during our 30th Anniversary year.
Times still remain
uncertain, and we are
always looking at ways to encourage
new supporters to ensure we can be here
for children and families in another 30 years.
In October we will be launching a new
awareness campaign to help spread
the word of the support that Children's
Hospice South West provides to families,
and all that we are able to offer because
of generous supporters like you.
Therefore, you may see us on your TV,
hear us on your radio or see us pop up
a little more often on your social media
channels! There seems no better time
than in our 30th Anniversary year to
try to encourage support from a wider
audience in this new way.
Eddie Farwell MBE
Co-Founder and Chief Executive Page 1

An update
from our
Director
of Care
Hello, my name is Alli Ryder and I am the Director of Care at Children's Hospice South West.
I wanted to share how we have been supporting families since the outbreak of COVID-19
and how, with your help, we are continuing to provide that essential care and support.
You will be aware that since the start of
the pandemic we have had to quickly adapt
how we provide our services. We now
deliver care in the hospice, at home and
virtually using tools like Zoom to connect
with our families.
As England starts to re-open and
restrictions lift, things are much slower
and more cautious in our hospices as
we continue to follow care restrictions
and protect the children and families we
support. We are still having to work
differently by wearing scrubs and PPE.
We continue to welcome families
into the hospice and fortunately
have not had to restrict visitors,
by using a bubble system and
zoned areas within the hospices.
We have missed our shared meals
with families around the dining table,
but this approach has allowed families to
remain together through difficult times.
While we are not allocating families set
respite nights just yet, we are open and
actively supporting families. Our current
approach is a resilience and supportive
model ensuring we are working with each
family to understand what their needs
are and how we can best help. This has
enabled us to be extremely responsive
when families need us most.
Our doorstep visits to families, just to
say hello or deliver food packages and
activity parcels, have allowed us to stay
in touch and have been a welcome part
of the ongoing support we have provided,
especially when families have been isolating
due to the vulnerability of their child.
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Day visits have been very popular and Music Therapy can now be accessed online
from home, not just when children stay. The Sibling Teams have been inspiring
with treasure hunts, spy challenges and competitions. We even found time to
produce a pantomime for families!
It has also been amazing to see our core service grow, keeping children who
are at the end of their life at home for longer, and supporting families with
real choices about where they wish to be when their child dies.
It is an inspiring time to be the Director of Care
and I am very proud of everything the team
have achieved, but we simply cannot wait to
have the children filling our hospices once more
with laughter, fun and rock concerts!
We have so many people to thank, including the
volunteers who have continued to ensure our
hospices and gardens look beautiful and
provide that restorative space families
need and those who have driven PPE
across the South West ensuring we
have the supply we need.
But we could not have achieved any
of this without you, our supporters.
At a time when COVID-19
challenged the world, you have been
inspiring in the ways you have found
to continue to support us.
A big thank you from everyone at
CHSW for helping us to support
children and families and make the
most of short and precious lives.
If you would like to make a donation to help our Care Teams continue their amazing work, please visit www.chsw.org.uk/donate
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Adela Mackie, along
with her mum and
friends, dressed up
as characters from
The Simpsons while
sightseeing in London.
They raised £1,500 in
memory of Adela's
brother, Nicholas.
Thank you to all our wonderfully colourful Rainbow Runners,
walkers, skippers and joggers who took part in this year's Rainbow
Run your way as part of our 30th Anniversary celebrations.
Together, they have helped to raise over £40,000. Special
thanks to event sponsors The Exeter and Ann's Cottage.
Sisters, Lizzie and Hannah, raised more
than £250 doing an awesome
sponsored litter pick in Uffculme!
Our
incredible
Rainbow
Runners
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Business consultant, Trevor
Lee, from Truro 'celebrated'
turning 60 by taking on the
44 mile 'Classic Quarter'
coast path run, raising a
total of £6,600
Evie-Rose and her big
sister love wearing their
new Saltrock CHSW 30th
Anniversary T-shirts! Thank
you to Saltrock for their
support - order yours here
www.chsw.org.uk/saltrock
This past year has
our 30 year history
changed - the incr
our wonderful su
South West
Here are
David Graham, an amateur artist
from Radstock near Bath, is selling his
wonderful watercolour landscapes in
support of CHSW. To purchase a painting
please visit www.dgwatercolours.co.uk

Karen Lane from St Austell set herself the
Strictly Come Biking challenge; 38 days
cycling on a static bike, in a different ball
gown each day! 1,330 miles pedalled
and over £1,400 raised!
been like no other in
, but one thing hasn't
edible dedication of
pporters across the
(and beyond)!
just a few...
This year our riders went above
and beyond to complete the 215
mile cycling challenge! Thank
you to everyone who took part,
sponsored, made a donation
and volunteered. Everyone had
a 'wheelie' great time while raising
vital funds, including event sponsors
Edwards and The Exeter. Thank you!
A big thank you to the
staff and customers of 85
Tesco stores across the south
west for supporting us in our
30th Anniversary year.
Every little helps!
WOW!
Our first in-person
event in 18 months
raised over
£200,000!
Five year old Amelie Cox
from Ivybridge was fabulous
by reading 106 books in just
four weeks as part of her
own charity readathon
and raised £50
We love to hear your imaginative fundraising
ideas and our Fundraising Teams are always
on hand to offer support. To read more
stories visit www.chsw.org.uk/news
There are lots of ways that you can get involved during our 30th anniversary year and beyond! Visit www.chsw.org.uk/30
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Little Phoebe’s story
We are Lotty and Dan - Phoebe's parents. In April of 2019,
we welcomed our first baby, little Phoebe, into the world,
a lovely water birth at home. Phoebe grew and developed
into the most beautiful, smiley little girl hitting her early
developmental milestones as expected.
As 2020 approached, there were signs that Phoebe's
development was slowing, so we took Phoebe for some tests
at the beginning of the year. When the final results came
through, it was devastating news, Phoebe was diagnosed
with Krabbe Disease; a genetic disorder of the
nervous system and a very rare disease affecting
around 1 in every 100,000 babies born. The life
expectancy of children with early infantile Krabbe
disease is approximately 2 years.
We threw ourselves at the idea of making memories with
Phoebe to cherish forever and for Phoebe to enjoy
many of the little things in life that would make her
happy. The plan was to create these memories with
family and friends, our list included playing with
jelly, walking with a dog, touching snow, painting
Phoebe's nails, riding a bike, meeting Santa and
having a tea party, to name a few.
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Then lockdown occurred, literally days after
the plans started. With Phoebe falling into the
extremely vulnerable group, we had to self-isolate at
home, missing precious time with family and friends.

That's where Children's Hospice South West came in. The staff at
Charlton Farm, just outside Bristol, were incredible. They made
it possible for us to make special memories in a safe and relaxed
environment. We had time in the hydrotherapy pool, had fun in
the garden going on a 'lion hunt', had time splashing in the outside
paddling pool, Phoebe had Music Therapy, played with jelly, made
footprints. They organised and accompanied us on our trip to
Noah's Ark and arranged a whole Disney day for Phoebe, including
princesses, Mickey and Minnie Mouse, a treasure hunt and a
special message from the Lion King cast. Not only did they allow
us to make these memories, but they were also there to help with
all the medical side of Phoebe's care - medications, nutrition and
helping us to make informed decisions on Phoebe's end of life care.
“Phoebe passed away peacefully on 20 September 2020 after
a stay at the incredible Charlton Farm, with us and teddies by
her side. She was 17 months old.”
We still have contact with Charlton Farm and have been to a bereavement
session to remember Phoebe. We want to keep sharing Phoebe's story to
build awareness of CHSW and raise more money for this fantastic charity.
Lotty and Dan have donated £4,000 to CHSW, raised from a culmination of a
wide range of fundraising activities from lots of their friends and family, as well as
complete strangers who have felt compelled to donate after hearing Phoebe's story.
These fundraising activities included a 5 year old who rode her bike 40 miles in 20 days in
fancy dress and raised over £1,000, Daisy Foundation mums who took part in a 700 mile walk/run,
a 24 hour sportathon, a Halloween danceathon and a raffle that raised over £1,000, among others.
Please make a donation today to help more families like Phoebe's. Visit www.chsw.org.uk/donate Page 7

Some dates for
your diary...
To find even more events simply
visit www.chsw.org.uk/events
Hold a 90s party and raise some dosh!
Friday 17 to Sunday 19 September 2021
Join the celebrations with a totally awesome
90s party to raise money for local children.
Booyah! Sign up today and get your wicked
90s party pack www.chsw.org.uk/90sparty
Walk in memory of a loved one
Saturday 2 October 2021
Join us in Falmouth (limited places available) or take part virtually,
for this uplifting evening remembering loved ones. Register today to
receive your memory pack www.chsw.org.uk/moonlight
Fire up your fundraising
by walking on hot coals
Thursday 11 November 2021
Raise festive cheer in
your Christmas gear!
Santas weekend Friday 3 to
Sunday 5 December 2021
Join us on Sunday 5 December
at a location near you, or
take part virtually anywhere
during our Santas weekend.
Registration opens soon...
Join us in Bristol, sign up today
www.chsw.org.uk/firewalk
Three days, three counties, three hospices… 215 miles!
Friday 8 July 2022 to Sunday 10 July 2022
Find out about this epic cycle challenge www.chsw.org.uk/ride
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Are you a business looking to do
something amazing in these difficult
times for a fantastic local charity?
Working together to support local families
We are looking for 300 companies
to be part of our Business Club
2022. Build connections, raise
awareness of your business and,
crucially, help make a difference for
local children with life-limiting illnesses and their families.
Find out more today www.chsw.org.uk/businessclub
Only
How can your autumn
clear out or declutter help?
As always, our shops need stock! We'd be so grateful to
receive your good quality clothing, accessories and shoes
and other items including books, toys and bric-a-brac.
Donating the items from your autumn clear out to your
local CHSW shop will help raise a few pounds
to support local children and families.
With 37 shops across the region, there
should be one close by! Find your
nearest one and check opening
times at www.chsw.org.uk/shops
Play our Lottery today
and help to raise a smile!
Our weekly lottery is an easy and fun way for you
to support children with life-limiting conditions
and their families here in the South West.
Each play holds the exciting chance to win one of
14 weekly prizes, including a top weekly prize of
£1,000. You'll also be in with the chance to win our
bonus rollover, which can reach up to £10,000!
Play today www.chsw.org.uk/lottery
to play today!
“I'm just about coming off Cloud Nine after my £1,000
win on the lottery! Things like this don't happen to
me! I've been walking around with a big grin on my
face and it was so wonderful to be a big winner.”
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Christmas is coming...
Our online Christmas shop is now open! From cards and
calendars to diaries and gifts, we have everything you need.
Take a look and order now www.chsw.org.uk/christmas
Christmas cards, diaries and calendars will be in stock
in our high street shops from mid September. Find your
local shop by visiting www.chsw.org.uk/shops
www.chsw.org.uk
enquiries@chsw.org.uk
Redlands Road, Fremington, Barnstaple,
Devon EX31 2PZ 01271 325 270
Help spread the news!
Please pass this newsletter on to family and friends for
them to learn more about CHSW and how, like you, they
can help make the most of short and precious lives.
Alternatively (if you'd like to keep your copy) they can
read it online along with past editions and sign up to
receive future editions at www.chsw.org.uk/newsletter
Charlton Drive, Wraxall, North Somerset
BS48 1PE 01275 866 600
Porthpean Road, Porthpean, St Austell,
Cornwall PL26 6AZ 01726 871 800
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