Newsletter
Abseiling for
brave Tommy
AUTUMN
2015
Nursing care at home
for local children with
life-threatening or
terminal illnesses and
support for their families
A local estate agent from Sims Williams
After his initial 15 hour emergency
surgery to remove a tumour the size of
in Walberton took on Portsmouth’s iconic
a duck egg and subsequent operations,
Spinnaker Tower for Snowdrop. Towering
he’s on the road to recovery. But it’s
more than 170 metres above sea level –
a long road, one that has seen him
two and half times the height of Nelson’s
undergo radiotherapy and chemotherapy
Column – big hearted Richard Moores
treatment to treat his condition.
was spurred on to complete his abseiling
challenge as a show of support for his
We all know how dramatically cancer
‘eight year old friend’ who is being treated
can affect our adult lives and how we
for a brain tumour.
need to ‘be strong’ to fight
it and we know how
This is what he said.
After his initial 15
“
scary that can be. But
‘I want to tell you
hour emergency
as an 8 year old! That’s
about a friend of mine,
just not fair, that must
surgery,
he’s
on
the
a really nice kind lovely
be so much
guy. He likes all the
road to recovery. But
to have to deal with.
normal things, Xbox,
At 8 I was still scared
it’s
a
long
road
that
football (well kind of,
he’s a Chelsea fan!)
has seen him undergo of the dark!!
My friend is so much
oh and he loves early
radiotherapy and
braver than me, he
punk music – his
chemotherapy
comes in to see me at
favourite track is the
work with his infectious
Splodgenessabounds
smile and full of chat and tends to leave
classic ‘Two pints of lager and a packet
with a couple of chocolates tucked
of crisps’! Yep, he’s just your average fun
in his pocket – much to his mother’s
loving guy.
annoyance!!
But he’s so far from average, he’s only 8,
He’s being helped out by the wonderful
he’s got a great bunch of school friends,
‘Snowdrop Trust’ and they’ll be an
wonderful family, he’s doing really well at
important part of his rehabilitation over
school and he’s also a great goal keeper
the coming months. I wanted to do
for his local under 9’s football team and
something to help out and try to show
trains with the Portsmouth academy.
him that I can also be a tiny little bit
But his world and the world of his family
brave.
and all his friends was flipped upside
Richard Moores abseiled The Spinnaker
down, completely out of the blue, he was
Tower in Portsmouth and raised £3,022
diagnosed with a brain tumour…
for the charity who as he said ‘are being
so helpful to his friend’.
”
In this Issue
Sunny day out at The Weald and Downland - Page 3 • Pink pub to Paris or bust! - Page 4 – 5
Chairman's
Report In Memory of Miles
This newsletter is a
celebration of heroes of
every shape and size.
Since the last edition
we have been
enthralled by the Pink
Pub to Paris Super Heroes. Their
escapades started at the Snowdrop
Annual Walk when some of them turned
up dressed in their costumes and after
posing for photos they took off over
the hills capes swinging! They took
Bognor by storm as they cycled at the
front of the Bognor Carnival floats, they
attended school events and so much
more. They have inspired so many
people and made them aware of the
charity, and the vital help we have, and
continue to provide for local families.
The Snowdrop children are all heroes
as they cope with treatments which
can make them feel very poorly,
operations which are invasive, hospital
appointments and inpatient stays.
They cope with it all.
Siblings are the unsung heroes too.
Family life is turned upside down when
one of the family has a serious illness
and it really does affect the day to day
lives of brothers and sisters. We think
about them too and offer days out and
sometimes the Volunteers, who help
Snowdrop Families, can be asked to
give siblings special support. These
volunteers are also heroes. They help
parents, drive families to and from
hospitals and become special friends to
parents and children.
It goes without saying that the
Snowdrop nurses and counsellor
are heroes. The families depend on
their professionalism, experience,
compassion and support.
Di Levantine
Chairman Co-Founder
CEO (unsalaried)
Welcome to our new
Trustee Stephen Elsom
Stephen is a Snowdrop father whose
little daughter Lucia was diagnosed
with leukaemia 2 years ago and after
treatment is now in remission.
He wanted to help Snowdrop in anyway
and was delighted to accept our
invitation to join the Board. He has had a
clothing business in Chichester with his
father for 20 years.
02
Tristan Gall wrote on his JustGiving
site ‘To keep the memory of my son
and hero Miles alive and to give
something back to Snowdrop, this
wonderful charity, to help children
have the support they need during
a hard time, my friend Ed and I took
on the challenge of riding the entirety
of the South Downs way (from
Winchester to Eastbourne) in one day.
That is 100 miles of off road riding,
climbing over 10,000 feet, almost the
equivalent of scaling Scafell Pike,
Snowdon and Ben Nevis. As much
as we both enjoy biking this was a
really tough challenge that pushed
us to the limit.
My son Miles was the most
amazing, brave, kind, fun and loving
person I have ever known and more
of a man than I could ever hope to
be. He had to go through hell with
his treatment for leukaemia and he
never complained and to lose him
to this horrible disease after he
fought so hard was cruel and unfair.
Whilst going through Miles’ treatment
the ‘Sussex Snowdrop Trust’ was like
having a supporting family around that
meant Miles could have less time in
hospital and their love and support was
always there for him and for us. Truly
remarkable people that befriended,
helped, supported and guided us as a
family through this terrible time.’
Tristan and Ed completed their
astonishing challenge to themselves
and were delighted to have raised
£1,834.08 already for Snowdrop
children and their families, and their
Justgiving page is still open
www.justgiving.com/ridingformiles
Miles’ mummy Alison, also wanted to
give something back to Snowdrop and
as a talented basoon player she and her
friends performed in a concert in the
Baptist Church in Chichester. Alison
was interviewed by Phil Hewitt from
The Chichester Observer and she said
“There is no way I could ever repay
Snowdrop for what they did. You can
just try to do small bits, but they were
wonderful.
The very generous and appreciative
concert audience gave £1,310 in the exit
collection.
Snowdrop Annual
General Meeting
Phil Portway Snowdrop Counsellor talked
to the AGM about his work over the past
10 years.
He said he soon realised that it was a
very important role within the Team and
that Snowdrop is a way of life which he
fully appreciated and accepted. He has
been able to help parents and children
to cope with many issues, fears, phobias
and bereavement.
Stay up-to-date with stories and fundraising
/snowdroptrust
@SnowdropTrust
In the very words of one of the children
it was simply “the best day ever”!
Sunny day out
at The Weald and Downland
Open Air Museum
A warm welcome awaited Snowdrop families at The Weald and
Downland Open Air Museum, Singleton on a sunny afternoon
in August by Director Richard Pailthorpe and his staff. This
wonderful day out was the idea of Mary Tomlinson who has
been a supporter of Snowdrop since it was founded and who
has been involved with the Museum for many years.
26 Snowdrop children and their families explored this
fascinating Museum with its collection of 50 internationally
important historic buildings all set in 40 acres of picturesque
countryside. The Museum staff also laid on plenty of interesting
hands on activities. Children were able to visit the ‘Smelly
Zone’ where they could have a go at making a lavender bag
and a tussie mussie (which is a small, fragrant posy). Many of
the children also enjoyed dressing up in Victorian clothing and
judging by the amount of laughter they all enjoyed playing the
Victorian games.
After so much excitement the families had certainly worked
up an appetite for the tasty tea which was laid on by Mary,
her team of volunteers and many of the Museum staff, who
brought out plates loaded with sandwiches and cakes which
were soon demolished with much enthusiasm!
This special afternoon visit was organised by two of the
managers at the museum, Karen and Lucy, who saw to
everything, from parking to arranging the activities and also
compiling, printing and handing out special maps with all the
activities listed.
Snowdrop would like to say a HUGE thank you to the Weald
and Downland Open Air Museum for so generously giving the
Snowdrop Families such a warm welcome.
Date for your Diary • Grittenham Barn Christmas Market - 20th and 21st November
03
Pink Pub
To Paris Or Bust!
A group of friends, all local men, decided to cycle to Paris on 16th
June 2015. It’s just under a couple of hundred miles, which for
a competent rider, isn’t too much of a distance, HOWEVER, they
limited themselves to £25 each to purchase a bike for the ride The worse the better. They had a 1970’s ladies shopping bike, a
three wheeler, vintage gentlemen and ladies bikes, and even a
vintage tandem. And they were wearing full fancy dress for the
entire journey.
They covered all of their own costs, and gave up their own
time, to raise money for The Sussex Snowdrop Trust, and raise
the awareness ‘of this fantastic charity’ as they said, ‘who are
unique in providing ‘nursing care at home’ for local children
who have a life-threatening illness or who may be terminally ill
along with financial and emotional support for their families’.
Three years ago they cycled from Bognor to Brugge, on
mountain bikes, and raised just over £22,000 for Snowdrop.
This time they wanted to raise more as every pound really does
help and make a difference to the charity.
For months they planned their extraordinary trip, meeting
regularly after their training sessions and, dressed as Super
Heroes, they attended as many events as they could including
the Bognor Carnival and Bishop Tufnell School Fete!
They left The Royal Oak - ‘The Pink Pub’ in Bersted, and were
given a heroes send off by their families, friends, fans and many
Snowdrop children and parents. Little Oscar was thrilled to be
photographed with his look-alike and hero Batman.
04
It was a miracle that Batman
was able to take part in the
PPP challenge at all, as
he had a life-threatening
operation himself when he
received a kidney donated
by his own mother. Which
made his 200 mile ride even
more remarkable!
Issey Riley was also
dressed for the party as
Wonder Woman. Having
just completed treatment
for a brain tumour, she
was certainly a very
special Super Hero.
£107,616.13 raised
People lined the roads to wave
to them and wish them well. They took Bognor by storm and
thousands of their Facebook followers tracked them every mile
that they cycled from Bognor to Paris.
Paris came to a standstill as 16 English cyclists dressed in
Super Hero outfits and waving the Union Flag rode along
the boulevards and eventually arrived with an escort of
French policemen on motorbikes, at their destination - The
Eiffel Tower.
erhero!
r sup
Issey and he
They arrived back in Bognor late in the
night exhausted but on a high, having
achieved what they knew would be a
huge challenge. Over the next few weeks
they didn’t give up their fund raising
efforts. Appealing to every friend and local
business to donate to Snowdrop. Every
day the amount got higher and higher!
The presentation party a month after
the Pink Pub to Paris Cycle ride, was
spectacular. The boys cycled on their old
bikes from Felpham to Bersted and of
course in their Super Hero outfits. Once
again their fans turned out to wave to
them. The cars, buses, vans and motor
bikes blared their horns and just as they
arrived at the pub the heavens opened,
thunder clapped and the rain poured
down. No one cared.
Families, friends and many parents
of Snowdrop children all managed to
squeeze into the marquees put up by
Chichester Canvass and the fun began.
A cheque 8’ long was presented to
Snowdrop Co-Founder Di Levantine.
The cheque was made out for a
staggering £107,818.13p.
The Super Heroes were Oli Hicklin, Mark
Ward, Ben Long, Alastair Smyth, Jason
Smith, Gary Pugh, Pat Cullen, Richard
Scopes, Paul Sherwood, Martin Bryant,
Allen Porter, Jack Keywood, Brad Knowles,
Jez Brooks, Jamie Huband & Dale Stevens.
Colin Hicklin & Damian Lindley drove the
support vehicles and fed and watered the
Super Heroes throughout their adventure.
Jan Cattermole (Pink Pub) has been behind
the cyclists every step of the way, providing
food, encouragement, raffle prizes and
support in every way she could.
So many people from all over the county,
and even further away, have been part
of this extraordinary fund raising event.
Snowdrop can’t thank the Snowdrop
Super Heroes enough for raising the
money that will ensure that the charity can
continue to help local children and their
families. It will pay for 6 months nursing
care by our superb Snowdrop nurses.
They have also boosted the awareness of
the charity to educate the community about
the significant help that Snowdrop provides
for children and their families, which money
just can’t buy.
Bonjour La France!
Leading the Bognor Carnival
05
Thank you!
Many donations are received
throughout the year from our
loyal supporters. Here is just a
selection of those who have helped
Snowdrop in recent months.
INDIVIDUAL/ORGANISATION DONATIONS
The Pagham Beach Club - in memory
of Kenny Harvey£3,841
Pagham Pram Race£750
East Wittering PCC£580
John Hollands£424
Blackdown Clay Shoot£1,000
Bishop Luffa C of E School - Charity Week£1,950
Owen Kenny Partnership£2,000
ReTreat Beauty Salon & Richard Pearce
Hairdressing - Beauty evening£500
1st Yapton Guides - bag packing at Sainsburys£100
Sussex Masonic Charities£600
Temple Lodge 4962£450
Bognor Regis Scout Council£243
Byron Court Residents Assoc.
Strawberry Tea£125
Summersdale Garage - Lavant Duck Race£231
Kings Walk Clay Shoot£1,510
West Dean Primary School Fete£310
Riley Motor Club£878
Molly Hedger - Head shave£600
West Chiltington Friends of School
Moya Summers Curry Evening£2,134
P Sheppey - Sale of Produce £12
Daniel King - Head Shave£130
Keith Simpson, Los Amigos Band£480
Crown and Anchor - Quiz Night£180
Iona Hooley - Fish & Chip Quiz Night£36
Coffee with Friends Group, West Wittering£52
St Marys Church Walberton PCC£142
Chichester University - Rounders Match£127
West Sussex Carpet Bowls - Charity Match£25
Lael Smith - Sponsored Silence£66
Maureen Sinclair - Table Top Sale£57
Sue Sargeant - Charity Golf Afternoon£71
T Lewry & K Gardener - Sponsored Danceathon£60
Special Supporters:
Aldingbourne Social Club
Baby Talk, Chichester
Anne Dobbins & Monica Lucas
Dan the Veggie Man
Emsworth Delicatessen
East Wittering PCC
Hare & Hounds, Stoughton
The Holly Tree, Walberton
Rita Hope
The Inglenook, Pagham
Jewsons Ltd, Bognor Regis
Kings Arms, Arundel
Mandarin Chef Takeaway
Barry Mitchell
Rose Green Co-op
Rose Green Post Office
The Star & Garter, East Dean
Stephen’s Pharmacy, Chichester
Sussex Camera Shop, Chichester
Sandy Lewis, Puzzle Club
Corporate supporters
Southern Water
Glanvilles
White Stuff
Butlins
The Ship Hotel, Chichester
Natures Way
06
op...
A first for snowdr
ndon marathon!
lo
e
th
r
fo
5 places
Snowdrop on the run!
Supporters of Snowdrop have taken part
in so many different activities to raise
funds for us and we invite readers to take
up the challenge to support Snowdrop
and raise funds in anyway that you like.
and that will keep me going’ What a
challenge for her as she hadn’t taken
part in anything like it before.
We applied for Marathon places 15
years ago! And this year we were finally
allocated 5 places.
A massive thank you to the other
marathon runners too who were Bruce
Mckinnon from London (£3,662.85)
Jason Smith (£2,125.69) Laura Wright
& Sharon Ellis (£2,239.25)
Sally Austin MD of Spirit FM and a
Snowdrop Trustee, was one of the first
people to take a place. She sent a text
from London ‘Blooming nervous now
but just have to keep remembering
why I’m doing it. It’s all for Snowdrop
She was sponsored by many listeners,
friends and family and raised £6,023.26
What an incredible result from our first
Marathon places.
Bognor 10K run
There was a huge turn out for Snowdrop at
the Bognor 10k run!
One team which included family and
friends were running in memory of baby
Noah. They have raised thousands of
pounds for Snowdrop in the past and
this was yet another way of raising funds
for us.
Also running were a team of teachers,
with their headmaster Mr Carter, from St
Philip Howard School in Barnham. One of
their students is a ‘Snowdrop youngster’
and has been undergoing treatment for
many months. The staff all admire her
determination and with her in mind these
teachers signed up for the 10K run.
St Thomas a Beckett
Flower Festival
Flower Festival in St Thomas a Beckett Church
- Pagham with stunning Arrangements depicting
‘Memories of World War II’.
Members from several local flower clubs came together to arrange
outstanding flower displays to represent the second world war. The vicar said
‘We believe in the importance of working with, and for, our local community’.
Snowdrop was so grateful to be the chosen charity to benefit from this
Festival. Di Levantine was presented with a cheque for £1,500 at a morning
service this Summer and was given the opportunity to talk to the congregation
about the work of the charity.
@
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email please contact us at [email protected] Thank you.
Snowdrop Annual Walk
Who we are...
If you didn’t make it to the Snowdrop Annual
Walk. You missed a treat! Delicious cakes
made by dozens of supporters and hundreds
donated by Truffles Bakery. The weather was
perfect for the 600 walkers who obviously
enjoyed every minute.
Diana Levantine
Chairman, Co-Founder &
(unsalaried) Charity Director
Nathan from Party on the Grass - the
marquee specialists in Arundel, gave us
the use of one of their elegant marquees.
Arundel MP Nick Herbert joined us for the
afternoon and the Super Heroes, including the Hulk, Batman
and Wonder Woman, posed for their photo before taking off over the hills!
Many Snowdrop families came on the walk, which made the day very special.
Over £5,180 has been raised from the event.
Clay Shoot
The scenery was stunning at the top of a hill in Lavant where a Clay Shoot was
held in aid of Snowdrop, raising an amazing £3,041.84. Steven O’Brien, one of the
organisers, said the day was a great success and the turnout of over 250 men, women
and youngsters, was far more than they had expected. It was also a day for families
and friends who just came along for the hog roast and delicious cakes, which the
volunteers had provided and served.
Dead Brilliant
A very big ‘Thank you’ to Peter James,
the international best selling crime
writer, for accepting our invitation to
talk at the Snowdrop Literary Lunch.
He entertained our 200 guests with his
absolutely enthralling talk about his
life as a writer. He explained that he
has been able to tap into many murder
investigations as he accompanies police
in and around Brighton to provide the
accurate details he insists on, when he
writes one of his books. Most people
attending the lunch had read all of Peter
James’ books and were delighted to be
able to see and listen to him in person.
This thrilling event raised £1,414.
Another guest was Joss Smales who
had just returned from his epic journey
Valerie Seddon
Vice Chairman & Trustee
Trustees
Sally Austin
Helen Court
Stephen Elsom
Oli Hicklin
Deirdre Hoggarth
Richard Jordan
Patrons
Clive Behagg
Mary & David Bowerman CBE
Hugh Dennis
Lady Miranda Emmet
Rev. Dr. Martin Warner
Registered Charity Address
Unit 3 The William Booker Yard, The Street,
Walberton, West Sussex BN18 0PF
T: 01243 572433
E: [email protected]
W: www.thesussexsnowdroptrust.com
Registered Charity No. 1096622
Limited Company No. 4557686
(Limited by Guarantee)
£1,414 raised
across the length of New Zealand’s
South and North Island, to raise money
for Snowdrop. Looking very fit after
his trek, he admitted that it is difficult
to come back to reality after 5 months
walking in one of the most beautiful
landscapes in the world. He gave
Snowdrop £4,064 which was a fantastic
result from his incredible trip.
Walberton Gardens Day
Walberton gardens, old to new, traditional to contemporary, were visited by
hundreds of gardening enthusiasts to raise funds for St Mary’s church and
The Sussex Snowdrop Trust. It was a glorious day and the gardens had been
lovingly planted, weeded, pruned and mowed. An Art Exhibition and teas all
helped to raise the wonderful gift of £1,500 for Snowdrop.
Pump Bottom Rocked!
Thank you Julian and Kathy at Pump Bottom Farm for putting on the fantastic
evening in aid of Snowdrop. The Hoedown band had everyone line dancing and even
square dancing! Followed by The Jive Aces - Britains Got Talent finalists. A huge raffle
of prizes, given by local businesses and friends, took the final donation to £659.87
Jane Evans
Michele Walker
Leanne Asling
Anna Jones
Christine Hawkins
Jackie Wheatland
Claire Dorey
The Snowdrop Care at Home team
The Westhampnett Centre
28-29 Westhampnett Road
Chichester, West Sussex
PO19 7HH
T: 01243 793619
Phil Portway
Family Support Counsellor
T: 01243 793617
Helen Crosby
Family Volunteer Co-ordinator
T: 01243 793619
Karen Spencer
Team Administrator
T: 01243 793619
Welcome
Our new
Patron!
Lady Miranda Emmet was
Snowdrop’s President for 18 years
and we are delighted to announce
that she has agreed to be a Patron.
07
Coffee, Cake
and Christmas
Cards
Give us a call on
01243 572433.
Our 2015 Christmas Cards have now arrived at
the office and we believe it is our best selection
yet! We are once again running our Coffee, Cake
and Christmas Cards campaign and we need
YOUR help.
If you feel you could host a get together, whether
it is morning coffee, afternoon tea or evening
drinks and nibbles then why not use this to
raise funds for Snowdrop. We can provide you
with invitations, posters, Snowdrop information
leaflets and of course a box containing a
selection of our Christmas Cards.
All our cards are also for sale at
‘Cards for Good Causes’ at:
Assembly room: North Street, Chichester
from 3/10 – 17/12
Capron House: North Street, Midhurst
from 2/11 – 16/12.
If you would like to take part in our Coffee, Cake
and Christmas Cards campaign please give us a
call on 01243 572433.
Also available from:
Snowdrop office: Walberton
every Tuesday – Thursday 10am to 4pm.
Make a Donation
•
Snowdrop spends over £350,000 every year on direct care
for our families.
•
A £10 donation will provide books such as ‘A Little Bag
of Worries’ for our counsellor to use in his work with our
children and their siblings
•
A £50 donation will help a family struggling with travel costs
to hospital. One mother travelled 46,000 miles in 18 months.
•
A £200 donation will provide an Oxygen Saturation Monitor.
•
£100,000 will fund our Nursing Team for 6 months.
•
Any amount donated however small or large helps us to
continue with our vital work with local children with life
threatening or terminal illnesses.
•
Snowdrop receives no government funding and relies solely
on the generosity of our local community.
You can make a donation by:
•
Filling in the donation form below and returning to us by post
•
Visiting our website: www.thesussexsnowroptrust.com and donating on line
•
Setting up a Standing Order with your bank – please call us for details
•
Leaving Snowdrop a legacy in your will – talk to your solicitor about arranging this
•
Text “snow22” together with your donation eg. “snow22 £20” and then send it to 70070
Please can you help us to help
these children and their families
Donation Form
I/We would like to make a donation and enclose £
Title
First Name
Surname
Address
Postcode
Please treat this donation as Gift Aid. I confirm I have
paid or will pay an amount of Income Tax and/or Capital
Gains Tax for each tax year (6 April to 5 April) that is at
least equal to the amount of tax that all the charities or
Community Amateur Sports Clubs (CASCs) that I donate
to will reclaim on my Gifts for that tax year. I understand
that other taxes such as VAT and Council Tax do not
qualify. I understand the charity will reclaim 25p of tax on
every £1 that I give on or after 6 April 2008.
Please make your cheque payable to: The Sussex Snowdrop Trust and send your donations to:
The Sussex Snowdrop Trust, Unit 3 The William Booker Yard, Walberton, West Sussex BN18 0PF.
08