Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 2
Denny was born with a hole in his back...
...weâ€™ll be with him for the whole of his life Shine supports over 9000 people with spina bifida and hydrocephalus, and their families, across England, Wales and Northern Ireland.
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 3
At every stage of life, Shine has a role to play... Shine supports over 9000 people with spina bifida and hydrocephalus, and their families, across England, Wales and Northern Ireland. It is our aim to offer an exceptional level of support as we seek to challenge issues that our members have to overcome. Our approach is to realise these goals by creatively enabling members, staff, and supporters to engage with our purpose in as many different ways as possible.
Campaigning Shine’s Go Folic! campaign alerts women to take extra folic acid BEFORE they conceive to help prevent spina bifida.
First steps ... or first wheels ... We strive to help our members gain whatever they need to improve their mobility, whether it be exercise, equipment, training or treatment.
Pregnancy screening We support parents whose unborn child is diagnosed with spina bifida and work with policy-makers to improve care. Birth ‘My Shine Support and Development Worker has been a constant tower of strength since day one. She was there when my daughter was born and she came to be with us when her shunt was fitted.’
School and college Shine’s Education Advisers help ensure that the effects hydrocephalus can have on memory, concentration and behaviour are recognised so that they don’t stop children achieving their potential.
And all the years beyond ... Whilst some services fade away when a disabled child reaches adulthood, Shine offers lifelong support.
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 4
Shine has always been there for me, to support me and help me Shine has over 90 staff across England, Wales and Northern Ireland and more than 20 local affiliate associations. Our skilled Support and Development Workers provide specialist support to families and also offer their comprehensive knowledge and experience to professional health and social care staff.
Shine’s magazine, website and busy ‘first-contact’ centre ensure a constant flow of information to and from our members. We also facilitate groups and organise events throughout the year. 0ZZ\LÄ]L
kindly This issue by supported
This issue kindly supported by
‘People can’t believe how passionate I get about my work on bladders and bowels. I believe everyone has the right to the support to get clean and dry.’ Gill Yaz, Health Development Manager
Shine uses partnerships to influence policy, improve services and advance research. Above: Shine’s members are involved in policy-making at every level.
Every donation helps, no matter how small ... The charity relies on voluntary donations, sponsorship, and its own trading company to fund all its services.
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 5
Born with spina bifida ... Every day in the UK, at least two of the babies conceived will develop Neural Tube Defects (NTDs) like spina bifida. Most babies born with spina bifida will also have hydrocephalus, which results in brain injury.
Hydrocephalus A build up of fluid compresses the brain and may cause the baby’s head to
Spina bifida The spinal cord does not form properly, leaving a gap or split
What is spina bifida? Spina bifida literally means ‘split spine’. Most babies with spina bifida will undergo spinal surgery within 24 hours of birth. They may need over 20 more operations before they are 18 years old. Spina bifida usually causes paralysis and loss of sensation below the ‘split’ in the spine. This leads to lifelong incontinence and reduced mobility. Children with spina bifida may use a wheelchair from just 3 years old.
‘Kids like my daughter spend a lot of time in hospital. I think to a degree they are robbed of their childhoods.’ Rachael Spiers
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 6
Meeting the challenges ... People with spina bifida face a lifetime of disability; we support them to overcome unimaginable challenges.
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:30 Page 7
Hydrocephalus – the hidden disability What is hydrocephalus? Hydrocephalus is a build up of fluid in the brain causing increased pressure. The usual treatment for hydrocephalus is to insert a shunt into the brain. The shunt drains excess fluid into the bloodstream via tubes with a valve to control the pressure. The shunt is not a ‘cure’, but it prevents it getting worse.
Scott Nielsen,18 years old, has hydrocephalus and had 20 major operations before the age of 15. In 2011 Scott cycled 2,000 km across Europe to fundraise for Shine.
Hydrocephalus can cause many challenges in everyday life including learning difficulties, memory and sight problems, headaches, and sleep disturbance.
‘Having hydrocephalus is like having a jigsaw with a piece missing’. ‘Shine answered the questions I had about my condition. They carried on explaining when the doctors stopped. I wish I knew then what I know now. I think all the new ideas are great. I think Benny Bear is great for the kids. The London group is great too. I have made good friends and look forward to meeting up. It’s important to me to be part of Shine and its future. I want Shine to give people like me a voice and in order to do so they have to be listening to me.’ Brian Treadwell
‘As a neurosurgeon, I can appreciate what Shine’s support means to families. It is a privilege to be involved with this charity – its work is urgent, uplifting and life-changing.’ Maria Cartmill, Consultant Neurosurgeon
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:30 Page 8
Hydrocephalus – visibility through understanding Benny Bear Benny Bear is a bear with a shunt. Benny helps children to understand what it means to have hydrocephalus and shows them all the things they can still enjoy in life. There are over 400 members of the Benny Bear Club. Members receive a monthly newsletter, a Benny teddy bear, and they can interact with Benny through his blog. To connect with Benny follow one of the following links: Benny’s blog – www.bennysblog.co.uk Benny Bear birthdays – www.bennysbirthday.co.uk Benny on Facebook – facebook.com/shinebennybear
Ella who has hydrocephalus and her twin sister Lucy, aged 9.
‘Being an invisible disability, makes it even harder for people to understand.’
Shine_8ppA4_AW_Aug12Rev2_Layout 1 06/12/2012 17:29 Page 1
shineUKcharity n e shineUKcharity
u@shineUKcharity /shineUKcharity w shineUKcharity
Shine on ... ‘Shine is the only national charity providing specialist help and a supportive community to people with spina bifida and/or hydrocephalus. We're determined to create an efficient, effective and proactive charity which offers the absolute best to everyone whose lives are touched by these disabilities. We're also out to celebrate the amazing achievements of our members and to actively encourage creativity and enjoyment within our community.
We need many energetic, generous and clever thinking partners of different kinds to help us achieve this - please contribute to Shine in any way you feel you can.’ Jackie Bland, Chief Executive email: firstname.lastname@example.org
Shine’s plan for 2011- 2016, Shine Forward, is available on request. Shine, 42 Park Road, Peterborough, PE1 2UQ 01733 555988 www.shinecharity.org.uk
Registered Charity: 249338 Registered in London no. 877990
Copyright Shine 2012
Spina bifida • Hydrocephalus • Information • Networking • Equality - Shine, supports over 9000 people with spina bifida and hydrocephalus, a...