Welcome to Living with Spina Bifida!

My name is Simeon Wakely and I am living with Spina Bifida. I have created this website to share my experience of growing up and to support young people who want to know more about Spina Bifida. Watch my short video which explains more about what I am doing.

What does Living with Spina Bifida mean?

Someone with Spina Bifida is born with an opening in their spine. A healthy spine should be closed to protect the spinal cord and to protect nerves that send messages back and forth between your brain and the rest of your body. For people with Spina Bifida the messages are not able to communicate to their muscles where the nerves are damaged. This means that their muscles are not able to move independently. Also for some people with Spina Bifida they have no sensation on their legs so they would not know if their legs had been bruised.

Simeon doing the 2012 Torch Relay  Meeting Mark Foster  image

Types of Spina Bifida

Occulta (Closed) : 

This means that the Lesion is covered within the Skin. However the membrane that is surrounding the cord is still within the spine.

Cystica (Open) :

There are visible signs when someone has this type of Spina Bifida Cystica. It is like having a rather big blister on your back that is covered by a thin layer of skin. There are two forms of this type of Spina Bifida:

Myelomeningocele  – This is the most serious  and unfortunately the most common of the two forms of Spina Bifida Cystica. In this form the Cyst does not only holds the tissue and cerebro-spinal fluid but it also contains nerves and part of the spinal cord.

Meningocele – In this form the sac contains meninges which are the tissues that cover the brain and spinal cord. It also contains cerebro-spinal fluid in which bathes the central nervous system.

Simeon on Holiday in off road wheelchair  Simeon mountain climbing in Devon  At Komedia Bath


Here are some links to other websites and blogs about Spina Bifida:

http://www.shinecharity.org.uk/ – Shine

http://www.wheeliegirlwithafaith.wordpress.com/ – Lizzy Sarah

http://jordantheheadcase.wordpress.com/ – Jordan Adams

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