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E: thisisme@shinecharity.org.uk
with photos, messages and
ideas for your club!
www.thisisme.org.uk
Now that the holidays a...
The man from Castlederg!
Hi! My name is Aaron, I’m 17 and live in Northern Ireland.
I have hydrocephalus and
in October la...
3
Map Chat
This is my first
time on, I just
wanted to say hi.
L. Doherty.
It’s my birthday
in June!
B. Duffy.
Once a gamer...
Your top-prize possession
My piano
The temptation you cannot resist
Popcorn!
The thing you would do if you
were invisible ...
The ‘Access All Aerials Does
Shine’ Radio
Marathon Review
ar
Hello! My name is Rowan
Ford, I am 20 years old and
I was the...
T.I.M
Megan the legend lives on!
6
How the weeks whiz by…!
Only a few months ago
the birds were everywhere
looking for a p...
Small Claims Court
Anna Staplehurst says, “I met Steve Backshall at Great
Ormond street hospital when I was in there havin...
Reg Charity No 2493388
Is there someone you would like to nominate to be a
Top Trump? Perhaps someone in This Is Me? If so...
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This is Me - Summer 2015

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The newsletter is part of the Shine club designed to link together 11 – 18 year old members with spina bifida and/or hydrocephalus. (We’re not strict though, and if people a bit older or younger want to join you’re still welcome!)

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This is Me - Summer 2015

  1. 1. E: thisisme@shinecharity.org.uk with photos, messages and ideas for your club! www.thisisme.org.uk Now that the holidays are approaching, I’m really looking forward to getting out in the sun with my shorts on and having some fun! From the chats that I’ve 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 residential’s in my life and had some really great times. As you could imagine I’ve been to lots of different venues, some are brilliant and some have been just about ok. The venue at Hannah’s in Seale- Hayne, Devon is absolutely flippin brilliant! I’ve 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! Summer 2015 Nic’s report This summer whether you live in England, Northern Ireland or Wales Shine wants to get a coffee project in your area. Look out for the Shine Youth Council on facebook as they will be helping to advertise these get togethers. We know you guys love to meet up with each other, hang out and have a laugh, guess what? - So do we! So what do you need to do? You can: 1. Respond to a Shine Youth Council member’s advert 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 I’m going to get away for a wee bit of surfing – anyone wanna come? P.S. Did you spot the new logo in the last issue? Scottish Power have very kindly given us a generous donation. This is what they are enabling us to do: develop the Shine Youth Council which in turn will help us to arrange more events for all you ‘This is Me’ members. Look out for Council members who will be arranging Coffee Projects, and don’t forget to sign up for the various activity days in your area. 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! 1 Nic Shaw, Shine’s part-time Youth Work Coordinator After the Summer Rez I’m going to get away for a wee bit of surfing – anyone wanna come? This is Me newsletter
  2. 2. The man from Castlederg! Hi! My name is Aaron, I’m 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 neurosurgeon’s 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. 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 isn’t 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 didn’t 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 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! 2 After being in hospital for almost two weeks I was allowed to go home without a shunt!
  3. 3. 3 Map Chat This is my first time on, I just wanted to say hi. L. Doherty. It’s my birthday in June! B. Duffy. Once a gamer always a gamer. C. Kay-Jewiss I’m not far away from where you are. C. Irwin. 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! I need to go but it was nice speaking to you. M. White. The big news is that my shunt is fine! I.R. Colebourne You’ve really helped, thanks x Anon. My pet hate is not having the latest technology. A. Dear. I have started an apprenticeship at the beginning of March! I’m really enjoying it! J. Price I’m excited about my new job but I’m kinda nervous too. J. Roxas Morgan
  4. 4. Your top-prize possession My piano The temptation you cannot resist Popcorn! 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! Your pet hate My pet hate is not having the latest technology. 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 piece of advice you would give to someone younger Live everyday like it’s your last, you never know what exciting things could happen! 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... 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 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 I’d 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.. Shine quizzes This is Me member, Alex Dear Shine hot seat 4 Alex Dear The temptation you cannot resist... Popcorn!
  5. 5. The ‘Access All Aerials Does Shine’ Radio Marathon Review ar 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 Hannah’s 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. Post the event, we have made (including Gift Aid) £697.97, which is a massive achievement by me and the team at Hannah’s 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) 5
  6. 6. T.I.M Megan the legend lives on! 6 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 I’ve 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 don’t get to see you before, have a puuurfect summer and don’t eat too many mice! Hello! My name is Megan. I’m 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. 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, 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. 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 couldn’t do either. 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! If I don’t get to see you before, have a puuurfect summer and don’t eat too many mice!
  7. 7. Small Claims Court Anna Staplehurst says, “I met Steve Backshall at Great Ormond street hospital when I was in there having my operation!” Steve is a BAFTA-winning English naturalist, writer and television presenter, best known for BBC TV's Deadly 60. His other BBC work includes being part of the expedition teams in Lost Land of the Tiger, Lost Land of the Volcano and Lost Land of the Jaguar, and he has worked for the National Geographic Channel and the Discovery Channel. He has published three novels for children and several non-fiction works. Small Claims Court urst says, “I met Steve Backshall at Great et hospital when I was in there having my eve is a BAFTA-winning English ter and television presenter, best known Deadly 60. His other BBC work includes he expedition teams in Lost Land of the nd of the Volcano and Lost Land of the e has worked for the National Geographic the Discovery Channel. He has published or children and several non-fiction works. 7 Anna Staplehurst says, ‘I met Steve Backshall at Great Ormond street hospital when I was in there having my operation!’ Steve is a BAFTA-winning English naturalist, writer and television presenter, best known for BBC TV’s Deadly 60. His other BBC work includes being part of the expedition teams in Lost Land of the Tiger, Lost Land of the Volcano and Lost Land of the Jaguar, and he has worked for the National Geographic Channel and the Discovery Channel. He has published three novels for children and several non-fiction works. SMALL CLAIMS This is Me ~ Civil Division ~ ‘I met Steve Backshall at Great Ormond street hospital when I was in there having my operation!’ If you have a small claim, we want to hear about it! Email your story to Nic E: nic.shaw@shinecharity.org.uk
  8. 8. Reg Charity No 2493388 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. Don’t be shy! Let us know and we can help to rate them! Joanna Pietrzak 180 26 98 13 72 100 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 Orville’s Quack Chat Show. Only weakness – cute puppies. 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 Top Trump Joanna

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