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Spina Bifida Awareness Week 2019 -  Caius' Story

29th October 2019


Caius’ Story...

He is not defined by his condition!

'Caius is a determined 2 year old whose spina bifida does not define him, it makes him more magical.'

What was your main reason for joining Shine?

Literally within 15 minutes of being told my unborn child was ill, the hospital I was at knew nothing of spina bifida, instead they advised me to terminate, I searched on Google for a charity that supports for spina bifida and called them and they helped me to understand, and made me feel that I wasn’t alone.

What ways has Shine helped you?

Shine have been a blessing to me and my family, if it wasn’t for our local Support and Development Worker’s help my family would have starved when all of our money was stopped, she also found charities that helped me to get equipment, and have helped so much with advice. 

What’s your proudest moment so far?

I don’t have a moment, I have a proud journey ahead of me, Caius is an inspiration to us all, he’s such a trooper and never lets anything get him down, he’s an amazing happy little boy and he lights up our world.

Caius was born with a hole the size of a fifty pence piece in his back and was told he would never breathe without a tracheostomy, or have any head control. He is now 2 years old, can stand with gatos and uses a standing frame to help build the strength in his legs needed to help him to walk. Caius is a very happy, active little boy despite his condition. He is fully determined to walk with AFOs (ankle supports) and has done everything that the medics said he wouldn’t.

Spina bifida does not define him, it makes him more magical.

Why is Shine important? 

There amazing with all aspects from diagnosis and onwards, information is key when it comes to children with conditions, and it shapes the future for the child when you know what you’re dealing with. Shine arrange amazing days out so myself and other families can meet up and chat while the children make new friends. They have also supported us with completing forms for funding and it’s never too much to ask.

What have you learned most about yourself as a person?

I have learned that having a disabled child has made me a better person, I no longer take anything for granted, I appreciate tiny things - every milestone, roll, unsupported sit and attempted crawl, I appreciate it all.

I just want to personally thank Laura Varma. She has been my rock at times she’s worked so hard to help us we’re forever grateful.

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