Broadwater mum's charity began at home

When Victoria Paine discovered her new-born baby Abigail had spina bifida, she felt she had no one to turn to.

After spending hours surfing the internet for information on the condition, she created a website called Parents and Relatives Listening and Empathising with you - Parley.

The charity aims to provide support to new parents with a child who has a long or short-term medical condition, who has to undergo surgery, or has a disability.

Mixed emotions

Victoria, of Leigh Road, said: "Today, you wouldn't know Abigail was any different to other normal little girls.

"But when she was born I went through a mixture of horrific emotions because I was a new mum with a baby with a rare disease and didn't know if she was even going to survive."

Someone born with spina bifida has an opening in the spine.

A healthy spine is closed to protect the spinal cord - a bundle of nerves that send messages back and forth between the brain and the rest of the body.

Victoria said: "I found it incredibly difficult to find any comprehensive information about the condition, because many babies with it either die before they are born or are terminated.

"The internet has information, but much of it isn't factual and some website only detail horrific stories."

Helping others

Abigail, now nearly three, had an operation at St George's Hospital in London to correct the deformity of her spine when she was eight-months-old.

Since then, she has dramatically improved and is now toddling around, although Victoria doesn't know how spina bifida will affect Abigail when she is older.

Victoria added: "Ultimately, I would like to have representatives across the UK, but Parley was started in Worthing and we hold the majority of our awareness events in the town.

"If the website helps other parents, then I feel I have done my bit."

For more information, visit: www.parleyonline.co.uk

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