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This

is Me newsletter

Nics report

1. Respond to a Shine Youth


Council members advert

Now that the holidays are


approaching, Im really looking
forward to getting out in the sun
with my shorts on and having
some fun! From the chats that
Ive been having with some
of you guys over Facebook, it
seems like you have had the
same idea!
Summer Rez is going to be
happening on August 10th-13th.
I have been on my fair share
of youth residentials in my
life and had some really great
times. As you could imagine
Ive been to lots of different
venues, some are brilliant and
some have been just about ok.
The venue at Hannahs in SealeHayne, Devon is absolutely
flippin brilliant! Ive been there
a few times and am always
surprised at the stuff that you
can get involved with. If you are
not signed up on that trip, get
yourself on it, it will be a blast!

2. Send me a message on
Facebook
3. Write, I want a Coffee
Project on the This is me
facebook group page
After the Summer Rez Im going
to get away for a wee bit of
surfing anyone wanna come?
Nic Shaw, Shines part-time Youth
Work Coordinator

P.S. Did you spot the new


logo in the last issue? Scottish
Power have very kindly given
This summer whether you live
us a generous donation. This
in England, Northern Ireland or
is what they are enabling us to
Wales Shine wants to get a
do: develop the Shine Youth
coffee project in your area. Look
Council which in turn will help
out for the Shine Youth Council us to arrange more events for
on facebook as they will be
all you This is Me members.
helping to advertise these get
Look out for Council members
togethers. We know you guys
who will be arranging Coffee
love to meet up with each other,
Projects, and dont forget to sign
hang out and have a laugh, guess up for the various activity days
what? - So do we! So what do
in your area.
you need to do? You can:

After the Summer Rez Im going to get away for a


wee bit of surfing anyone wanna come?

E: thisisme@shinecharity.org.uk
with photos, messages and
ideas for your club!
www.thisisme.org.uk

Summer 2015

P.P.S. Did you know that here


at Shine we are always looking
for eager, committed members
for the Shine Youth Council?
Perhaps one of these days that
could be you!

The man from Castlederg!


Hi! My name is Aaron, Im 17 and live in Northern Ireland.
I have hydrocephalus and
in October last year I had a
complete new shunt fitted, due
to it becoming disconnected
in my neck. Two weeks later I
was back in A&E with severe
abdominal pain. Scans were
taken and the doctors liaised
with the neurosurgeons in
Belfast and on the second
night I was transferred to the
Royal in Belfast which is the
only hospital in Northern Ireland
with a neuro unit. I was taken
to theatre and they externalised
my shunt from the abdomen as
I had developed pseudocysts.
These are like pockets of fluid
forming from the fluid coming
from my shunt. I was back on
the ward and felt a lot better
quite quickly as the cysts
started to shrink.

After being in hospital


for almost two weeks I
was allowed to go home
without a shunt!
The fluid was draining well the
first few days, then we noticed
it just stopped. Usually you
would expect to be unwell if the
fluid isnt draining, but I was
fine and having no headaches
or anything. They were a bit
unsure what was going on
with me so they decided to
take me to theatre and insert a
probe into my brain to measure
the pressure there. This was
left on for about a day and a
half but didnt show anything
unusual and I was still really
well. My consultant was really
very surprised as to how I
was and they were starting to
contemplate that maybe I might
2

not need a shunt now!


After being in hospital for
almost two weeks I was
allowed to go home without
a shunt! It was quite scary at
first, but I have got more used
to it now. They did warn me to
go straight to the hospital if I
develop a bad headache, as
it could be a sign of pressure

building inside my brain again.


I have been back in hospital
since then with a very bad
headache, but it turned out
to be because I had a kidney
infection.
So, up until now, I have
managed about 3 months
without a shunt after relying on
one for 17 years!

Map Chat

Im not far away


from where you
are. C. Irwin.

This is my first
time on, I just
wanted to say hi.
L. Doherty.

The big news


is that my
shunt is fine!
I.R. Colebourne

S Club 7 in
Cardiff, bring it
on! L. Sarah.

Little snaps of little chats


that I have been having
with you. Look out you
just might be on there!

Youve really
helped, thanks x
Anon.

I need to go
but it was nice
speaking to you.
M. White.
My pet hate

is not having
the latest
technology.
A. Dear.

Its my birthday
in June!
B. Duffy.
I have started an
apprenticeship at
the beginning of
March! Im really
enjoying it!
J. Price

Im excited
about my new
job but Im kinda
nervous too.
J. Roxas Morgan

Once a gamer
always a gamer.
C. Kay-Jewiss

Shine hot seat


Shine quizzes This is Me member, Alex Dear
Your top-prize possession
My piano
The temptation you cannot resist
Popcorn!

The piece of advice you would


give to someone younger
Live everyday like its your
last, you never know what
exciting things could happen!

The thing you would do if you


were invisible for the day
I would sneak onto an aeroplane
and visit lots of countries for free. If
I could go anywhere, I would go to
Australia!

The film I can watch over


and over
I can watch Avengers Assemble
because I never get bored of it,
plus it makes me want to be a
super hero like them...

Your pet hate


My pet hate is not having the latest
technology.

The song that means the most


to you
Run boy run by Woodkid, it always
makes me feel happy because its
an uplifting song.

The person who influences you


the most
My mum because she is very nice
and I look up to her.
The book that holds a lasting
depth
The Smartest Giant In Town - by
Julia Donaldson. I love it because
I can remember reading it with my
mum when I was younger.

The
temptation
you cannot
resist...
Popcorn!

The ambition that continues


to haunt you
I would love to go to a far away
country and spend lots of time
there in a nice villa.
The person from history I would
like to sit down and chat with
The person I would sit down and
talk to is my Great Granny. I did
not know her much and I would do
anything to know more about her,
so Id love a sit down and a chat.
How would you spend your
dream 24 hours?
I would spend my 24 hours with
my family. We would go on a
train to Paris and visit the Eiffel
Tower. We would then go
back home and have a big
dinner and watch a movie..

Alex Dear

ar

The Access All Aerials Does


Shine Radio
Marathon Review
Hello! My name is Rowan
Ford, I am 20 years old and
I was the team leader for
the Shine radio marathon
challenge. I chose to do
a 24 hour radio marathon
specifically to raise money
for Shine because they have
given me a lot of support over
the years to help and support
my condition. I have been
growing up and living with
the condition hydrocephalus
which means that I am prone
to having fluid on the brain
which must be drained.
Shine has given me so much
support I felt that I had to give
them something back, hence I
thought about doing the radio
marathon as a fundraising
activity and to also raise
awareness of their fantastic
work.
It was thanks to Access All
Aerials Radio at Hannahs at
Seale Hayne here in Devon
that made the challenge
possible, and it was fantastic
to have the support from my
girlfriend Amy MacDonald
too.
I did the marathon for 24
hours not only because I
wanted to help get the vital
funds that Shine needs to
carry on the fantastic work
that they do, but also to
help raise awareness of the
various conditions that Shine
supports. I also wanted to
challenge myself as well
to see if I could actually

broadcast and be on the


airwaves on Access All
Aerials Radio for a full 24
hour period, which I had
never done before. It was
quite motivating before
the marathon started to
have BBC Spotlight pay
me a visit and interview me
about the marathon and why
I was doing it. It felt very
surreal indeed, actually being
interviewed and it going out
on the local news as well that
very evening.
Some of the radio station
staff and presenters that were
broadcasting alongside me
within the 24 hour time period
included: Carl Munson, the
station manager and my
producer, Brandon Lee
Bolt, co-host from the
Alternative Feel Good Show,
Dan Hoare, friend of the
station, Brenton Lee Jones, a
fellow presenter, Steve Bailey,
as well as Tracy Roberts and
Johnathan Dailey. These were
just some of the names who
agreed to take part in the
marathon in some way. It was
great to have other people
presenting alongside me as
we were able to bounce ideas
off each other, have fun, and
play the music that people
wanted to hear during the
marathon.

team at Hannahs at Seale


Hayne and Access All
Aerials Radio!
If you wish to listen in to
me during my shows on a
Friday afternoon from 2-3pm
and 4-5pm, log onto the
following webpage: http://
www.spreaker.com/user/
accessallaerials and to
contact me during the time
that I am on the airwaves
E: rowan.ford@
discoverhannahs.org or call
T: 01626 325882 / 325828.
Thanks for reading this and
I hope you tune in and get
involved in the action on
Access All Aerials Radio.
Rowan Ford
(Team Leader and
Presenter)

Post the event, we have


made (including Gift Aid)
697.97, which is a massive
achievement by me and the
5

T.I.M
How the weeks whiz by!
Only a few months ago
the birds were everywhere
looking for a place to nest
and I was out on the prowl
looking for whatever I could
get my paws on. The cattle
moved out into the fields
and there were a couple of
nice new calves born. They
were great fun, but skipping
around with their mothers
there was no chance of a
sneaky bit of milk! On the
other side of the farmyard
lambs were born left, right
and centre. Watching
those guys was better than
Minecraft!

Now, my ninja skills have


improved considerably. If I
could get a black ninja mask I
would have one. My speed has
improved to the point of being
insane and I still love to use my
claws.
As I have been watching the
birds go by Ive had my paws
on Bruno Mars new song
Uptown Funk. Now that is a
song a cat can groove to
As I move into summer I will
be looking to improve on my
climbing skills. I am discovering
new ways to wind up the dogs
in the yard and do a runner! If
I dont get to see you before,
have a puuurfect summer and
dont eat too many mice!

If I dont get to see you


before, have a puuurfect
summer and dont eat
too many mice!

Megan the legend lives on!

Hello! My name is
Megan. Im 13 and
I currently live in
Bromsgrove. I attend
a Grammar school in
Warwickshire, and my
favourite lessons are
English, Drama and
Food Technology since they all allow me
to be creative. With my
free time, I like to write,
bake, act, sing, dance and do gymnastics
at my local club. I also do singing lessons
at school and in the spring term, I intend to
attend Drama club and Rounders practice.

which was incredible! I would love to be a part


of some more coffee mornings or meet ups in
my area. As for my shunt, I am pretty much a
normal teen apart from my hydrocephalus.

I am a member of This is Me because I have


hydrocephalus and a shunt fitted. I recently
joined the Shine Youth Council, which I enjoy.
The other members and I were on the radio,

Luckily, I am almost fully healed. I hope to


continue working towards my dream careers
(actress or writer) as well as making more
friends through This is Me!

However, last month, my shunt malfunctioned. I


was in the hospital for a few days (during which
I had an Endoscopic Third Ventriculostomy).
For 11 years, there were no problems with my
shunt, so this came as quite a shock. After
getting out of hospital, I was absent from
school for a week and forbidden from doing
sport for at least 3 weeks after the operation.
This was quite upsetting because I love
gymnastics and dance, but suddenly I couldnt
do either.

Small Claims Court


Small Claims
Court
SMALL
CLAIMS
This is Me

~ Civil Division ~
If you have a small claim,
we want to hear about it!
Email your story to Nic
E: nic.shaw@shinecharity.org.uk

urst says, I met Steve Backshall at Great


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my operation!

Top Trump Joanna


Is there someone you would like to nominate to be a
Top Trump? Perhaps someone in This Is Me? If so,
send me your suggestions on Facebook. It could be
someone who has been having a tough time lately, or
who has achieved something like a personal goal or has
just done something tremendous. It might be your local
Support and Development worker that you would love
to embarrass and highlight in the next issue! Or perhaps
another member of Shine staff who has really been a
great help to you. Dont be shy! Let us know and we
can help to rate them!

Joanna Pietrzak

180

Joanna Pietrzak has been a SHINE Support and Development


Worker for four years. She can officially be classed as a Northern
Lass having been raised in Oldham and now living in Bury. Past
hobbies have included Kick-boxing with inspiration from Lara Croft.
Claim to fame is appearing on two episodes of Keith and Orvilles
Quack Chat Show. Only weakness cute puppies.

26
98
13
72
100

Shines Lifelong Opportunities Programme 2015

Shines Summer Rez!


A residential event for young people aged 12 16 years with
spina bifida, hydrocephalus or intracranial hypertension.
Organised lively activities including archery, music
workshop, taiko drumming, kite flying, arts and
crafts (including glass painting) and jewellery
making. There will also be lots of opportunities
for socialising.
Venue:

Thesubsidisedchargetoeach
Hannahs@ ,
e
n
participantis200.Paymentcan
y
a
Seale-H
bemadebychequeor
bbot,
NewtonA

debit/creditcardorby
Devon
Q
pre-arrangedinstalments.
TQ126N

Monday
10th August
Thursday
13th August
2015

Places are limited so please register your


interest as soon as possible. Closing date
for applications 27th March 2015
To find out more about this event or request an application form contact:
Joan or Denise T: 0113 255 6767 E: office@shinecharity.org.uk
RegCharityNo249338
Shine, 64 Bagley Lane, Farsley, Leeds LS28 5LY

Reg Charity No 249338

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