A club designed to link together 11 – 18 year old members with spina bifida and/or hydrocephalus. The club has been funded by the Roald Dahl Marvellous Children's Charity. VISIT: www.shinecharity.org.uk/thisisme

1. i s Eh i mST
E: thisisme@shinecharity.org.uk
with photos, messages and
ideas for your club!
www.thisisme.org.uk
I can’t believe the difference
in the temperature between
Belfast, where I am now living
and studying, compared to
Cambridgeshire where I moved
from! It was so much warmer
down there!
The other day I was listening
to Radio 1. One of the DJs had
just come back from Belfast
and said it was: ‘A fabulous city
that you have just got to visit.’ I
couldn’t agree more! My move
here has been a good thing
for me. I am currently studying
Theology in Belfast, which I am
loving. Getting accustomed to
student life and the workload has
been ok so far, and I have met
some really cool people here
in Northern Ireland. I live on a
farm about half an hour south of
Belfast; I love being outside and
occasionally help out with the
Spring 2015
Moving to Belfast
Nic Shaw, Shine’s part-time Youth
Work Coordinator
Coffee project
These past few months of changing around for me have
sadly had a knock-on effect for the Coffee Project. But, don’t
worry! I will be resurrecting this soon and brewing up at a
coffee house near you. Keep your eyes peeled for dates of
events coming to a Costa near you soon.
cows and sheep. We also have
three dogs called Lizzy, Jen
and Tilly.
Regardless of the change in
location, you will be pleased to
know, that my work for Shine
has continued! This is Me
has had a couple of great new
additions and is still growing. Its
been good to meet up with you
and find out how you are doing.
I managed to get out and see
some of you over the past few
months and have a chat about
the good and the not-so-good
stuff. Even though the young
people of Shine are all over
England, Wales and Northern
Ireland, that has not stopped
you from calling me up to talk,
which is great. I know that a bit
of support is often welcome.
You guys deserve medals for
the things that you take in
your stride!
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Get in touch with me on T: 07456 669205 or
E: nic.shaw@shinecharity.org.uk or find me on Facebook
C facebook.com/Shine.Nic.Shaw

2. My selfie with Simon
By Tegan Welch
Hi! My name is Tegan. I am in my seventh year of having a
shunt and I’ve luckily never had a problem with it. I have read
some member’s posts on the This is Me Facebook group
and a lot of people have had a lot of problems with their
shunts. I am always very careful about what I do, but I recently
discovered that rope bridges are not good though!
I have done some awesome things through my life. For
example, I have been to Disney Land, and not very long ago I
went to London for the weekend to watch the X-factor. I even
managed to get a selfie with Simon Cowell! Out of all the
judges, he was the only one that stopped for autographs, which
surprised me. The only bad part to the whole weekend away
was having to wait in line to go into the arena. The X-factor
show was supposed to start at 7:30pm but it ended up starting
at around 10:30pm. But, the wait was definitely worthwhile,
because we got to see some amazing acts, such as Kerrianne,
Only The Young, and Chloe Jasmine. One of the worst acts
was Blonde Electra!
During that weekend me and my family also went to Wembley
stadium and had a tour, where we had our photo taken with the
English FA Cup. That weekend was one I will never forget!
This is just a little insight into my life – I hope to see some
about you sometime!
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“I even managed to get a selfie with
Simon Cowell! Out of all the judges,
he was the only one that stopped for
autographs, which surprised me.”
The This is Me club now has a massive 240 members!
Did you know?

3. Nic Shaw: Last year I was outside building a porch
for the front of a shop, when I heard a strange
sound. After hunting around, l discovered a little
kitten no bigger than my hand, hiding underneath a
big flower box. When he came out he didn’t scratch
or hiss he just whined! I thought he was the puurfect
candidate for a This is Me mascot!
Robin’s remedies
Shine’s Robin Barnatt gives advice on
self catheterisation
“But catheterising takes so long, and makes
me feel so different from my friends…”
We all need to empty our bladders regularly; it’s
a part of life, and essential for keeping us healthy
(especially our kidneys, which remove lots of
unwanted chemicals from our blood). But emptying
bladders is not always so straightforward for
people with spina bifida. The nerves to and from
the bladder don’t always work so well, and so you
need to catheterise. Some people find this very
frustrating and, for a lot of people in their teens
and young adulthood, it’s a REALLY sensitive
issue. Maybe your parents did it for you as a child?
Or someone came into school to help? But now,
many of you won’t want someone doing that – so it
becomes YOUR responsibility.
Having to do something like catheterising might
make you feel a little different from others; it can
also be hard to remember to do it if you don’t
get the feeling that you need to go. But it is a big
deal. Regular catheterisation makes ‘accidents’ –
wetting yourself, or leaking – less likely, and you
will probably get fewer infections down there too.
Most importantly, it keeps your kidneys safe, and
maybe keeps you out of hospital!
To make sure you remember, you may consider
the following:
• Try setting reminders on your mobile phone.
• You could ask a close friend to remind you.
• You may like to ‘timetable’ it into each day
at particular times as routines can be very
helpful.
We all have to do things that can seem a bit
tedious, but this is one thing not to skip – a
few extra minutes could make you feel more
comfortable around your friends, and if you are
more comfortable then you are likely to be more
confident that these little accidents won’t happen.
If you have a health question, contact
Robin on T: 01733 555988 or
E: robin.barnatt@shinecharity.org.uk
The This is
Me mascot
This is T.I.M, named after This is Me, and he has now been living with
Nic in Belfast for three months. After a couple of days in the house, he
soon began to warm up and show his ninja cat skills. He can now scale
up the back of the armchair with ease. Out in the yard are two large
sheep dogs, Jen and Lizzy. When they first saw T.I.M., he climbed over
the house, got on the roof and jumped down in front of them. Even
though this was not the smartest move, he soon fended off the two
dogs with a hiss and introduced them to his claws.
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4. Your top-prize possession
Terence, the tiger. My mum bought it for
me before I was born. It was the only
toy she bought before I was born.
The temptation you cannot resist
Chocolate cake!
The thing you would do if you were
invisible for the day
I’d eat lots of chocolate cake and no one
would see me!
Your pet hate
People talking when I watch TV.
The person who influences you the most
My mum; I always talk to her if I need to and
she is always around.
The book that holds a lasting depth
I don’t really have one special book, but I
love all Roald Dahl books.
The piece of advice you would give to
someone younger
Never go to bed on an argument.
The film I can watch over and over
I have too many too choose! Matilda,
Home Alone, The Witches, Elf...
The song that means the most to you
I love ‘Shake it Off’ by Taylor Swift – every
time I hear it, it makes me happy and my
sister and I love to dance around to it!
The ambition that continues to haunt you
I have tried several times to canter when
horse riding but I have fallen off twice
and it is a bit scary.
The person from history I would like to sit
down and chat with
I don’t know much history so I choose my Great
Granny. She died when I was a year old and I
would have loved to get to know her better.
How would you spend your dream 24 hours?
I would go to New York. Lots of films I have
watched have been filmed there, so I would visit
all those places I have seen in the movies.
Shine quizzes This is Me
member, Kaela Moore
Shine hot seat
4
Kaela is 12 years old and has spina bifida and
hydrocephalus. She lives in Buckingham with her little
sister Becky, two cats, Skittle and Merlin, and a
dog called Alfie. Kaela loves swimming,
horse riding, and playing the violin.
Kaela Moore
“I’d eat lots
of chocolate
cake and no
one would
see me!”
“I would go to New York. Lots of films I
have watched have been filmed there”

5. Fun at Hogwarts
5
It was fascinating to
see how small the
robes were that Harry,
Ron, and Hermione
wore when they started
at Hogwarts!
“The Harry Potter
experience was
an event enjoyed
by everyone and
a day never to be
forgotten!”
Nic and I met fourteen very
excited This is Me members
and their parents/carers (who
were equally excited!) at the
Harry Potter Studio Tour in
Watford on the 24th October
2014. Felix and Nicole were
extremely pleased to see one
another again as they had met
at the Cadbury World Tour and
were soon exchanging email
addresses.
Everyone received their Harry
Potter Activity Passports at
the beginning, so that they
could be stamped along the
way and provide a souvenir of
the tour. We were led through
to a room where we told
about the history of the Harry
Potter books and films, and
then taken to a cinema for a
presentation.
We all stood in awe as we
were taken into the Great Hall,
which is featured in all the
films, and the start of the tour
began. It was fascinating to
see how small the robes were
that Harry, Ron, and Hermione
wore when they started at
Hogwarts! We all wandered
around the inside sets, which
included Hagrid’s Hut, Mrs
Weasley’s kitchen, Harry and
Ron’s bedroom, the Ministry
of Magic, and the Chamber
of Secrets. Some members
stopped in the Green Room
to have photos taken riding a
broomstick.
The tour then continued
outside and we saw the Night
Bus from the film Prisoner
of Azkaban, the Weasleys’
car, Hagrid’s motorbike, and
Privett Drive. We then had the
opportunity to try Butter Beer
and stop for lunch and a chat.
The tour continued with a
display of the animatronics
and then the highlight for
many – Diagon Alley! Some
members were very brave
and stopped for a photo with
a Death Eater. Last stop
was the gift shop where we
could purchase a variety of
wands, scarves, and other
Harry Potter memorabilia.
The Harry Potter experience
was an event enjoyed by
everyone and a day never to
be forgotten!
by Angela Bailey, Shine Support and Development Worker

6. Shine Youth Council
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Over the weekend of the
10th–12th of October, we
had our first youth council
in Coventry. There were
six young people, Aaron
Mckane, Amy Macdonald,
Rosie Booth, Megan White,
Rowan Ford and Simeon
Wakely. The rest of the team
were made up of, Andrea
Daye who volunteered, Elaine
Adams (Shine’s Support and
Development Worker from
Coventry) and the carers or
parents of the students.
‘I enjoyed my time in Coventry
at the Shine weekend, where
the first Shine Youth Council
was set up. We stayed at
Hereward College and the
accommodation was excellent.
The highlight of the weekend
was getting to meet new people
from across the UK. It was
interesting seeing what they
have done in their local area to
promote Shine and it helped me
to see what I can do in my area.
We were even interviewed on
the radio, to help us let the
people of Coventry know that
we were in their city setting up
the Youth Council, and
having our first get together
to decide what we want to do
in the future. I really enjoyed
the T-shirt and jumper design
session. We designed one
specifically for the Youth
Council so that when we are
at a Shine event, we can wear
them to promote the Youth
Council. I would like to thank
Nic Shaw for organising such
a fun and packed weekend!’
Aaron McKane, Shine Youth
Council member.
‘The venue was amazing and
very accessible for everyone.
It would be a suitable place for
other residentials or our next
Youth Council meet up. Over
the weekend, we talked about
what a Youth Council is and
the roles we have as people.
We also talked to the other
members in the Youth Council
about our experiences and
shared them with people in the
This is Me club!
The radio interviews were
really good, considering the
small amount of time we had
to get everything together.
Everyone was so nervous but
with the support of the other
youth Council members, the
interviews were great. One
thing we did learn; when you
mix the Youth Council with
pancakes, you get a very hyper
Youth Council, especially when
you add a guitar to the meeting
– it just ends in laughter!’
Amy MacDonald, Shine Youth
Council member.
Supported by

7. Shine’s Lifelong Opportunities Programme 2015
Shine’s Summer Rez!
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.
Thesubsidisedchargetoeach
participantis£200.Paymentcan
bemadebychequeor
debit/creditcardorby
pre-arrangedinstalments.
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
Shine, 64 Bagley Lane, Farsley, Leeds LS28 5LY RegCharityNo249338
A residential event for young people aged 12 – 16 years with
spina bifida, hydrocephalus or intracranial hypertension.
Places are limited so please register your
interest as soon as possible. Closing date
for applications 27th March 2015
Monday
10th August –
Thursday
13th August
2015
Venue:
Hannahs@
Seale-Hayne,
NewtonAbbot,
Devon
TQ126NQ
We want to hear from you!
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We want to
hear from you!
Have you ever been in the newspaper, magazine, or any other
media apart from Facebook?
Come on and get your voice heard! Please email
Nic Shaw on E: nic.shaw@shinecharity.org.uk
At This is Me, we are always looking for
articles to put into your newsletter.
Over the past year I have been traveling
around to various This is Me events,
where I get to meet loads of young people
connected with Shine. I’m constantly
surprised by their approach to life, the
activities that they are interested in, and
the cool things they get up to. I have met
climbers, guitarists, swimmers, farmers,
computer whizz kids, hairdressers, radio
DJs, writers, artists, sailors, basketball
players, and fashion gurus.
We’d love to hear from you here at Shine
Head Office. Why not write up a short
account about yourself and your interests?
Or, perhaps you could share a story about
your experiences, whether it be a recent
hospital visit or a holiday.
All you need to do is
email us your article up
to 250 words plus a good
photo. We can then
publish your article in
the This is Me
newsletter. We also love
to see your drawings so
why not share your
cartoons or sketches
with us! Not only does it
mean that This is Me
members get to know
you a bit better, but it’s
also a fantastic
opportunity to get your
work published – which is great to put on
your CV! Cheers, Nic!

8. Jessica Price, This is Me member, says: ‘I had to stay
in hospital overnight, because they were going to do
tests on me in the morning to decide whether I needed
an operation. Mum and I really didn’t want to stay, but
then we got told that Jonathan Ross was going to come
and visit me to ask me about my hospital stay. He came
in with cameras and sat next to me – I was so excited, I
wanted to cry with joy! Turns out, they were filming for
the Comedy Gala series that year!
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
Reg Charity No 2493388
Join us on Facebook!
This is Me has a closed
Facebook group, which
is private so you have a
safe space to network
with other young people
with spina bifida and/or
hydrocephalus. Members
ask each other advice
about school work, they
can get in touch with a
member of Shine if they
have a health issue, or
simply share a few jokes,
or keep in touch with
their This is Me friends! If you are 13 years old or over and
want to join the group on Facebook, just request to be
invited at C www.facebook.com/groups/Shine.ThisisMe
or contact Nic at E: nic.shaw@shinecharity.org.uk
A couple of weeks ago I had
the opportunity to get out
to Todd’s Leap in Northern
Ireland. The purpose was
to see if this was a venue
that would be good for some
activities. It is an outdoor
activity centre that has off-
road Land Rover tracks and it
also has the longest zip wire
in Ireland that goes across
a valley. We are looking into
the possibility of running
something at this exciting
venue – so keep your eyes
peeled!
Because the Harry Potter
Tour was received with such a
great response last year, and
because we could only offer
a limited number of spaces,
we would love to do this again
sometime this year and give
some more of you the chance
to come along. We will keep
you posted!
I will also be continuing to run
the coffee project this year.
Our Youth Council will help me
to run this – keep up the good
work, guys! We made such a
good start with our brand-new
Youth Council last year, and
we will run meetings a couple
of times a year. Cheers, Nic!
Upcoming
events