Learning your unborn child may have a congenital illness is one of the worst ordeals a parent can suffer.

And spina bifida is among the most devastating. Although the severity of the condition - a fault in the spine, which develops in early pregnancy - can vary, most children born with the disability will require lifelong support. The worst affected can die within days.

For the majority, that is not the outcome, but most children born with spina bifida will be paralysed from the waist down, becoming life-long wheelchair users and affected by bowel and bladder complaints. Eight out of ten will be affected by the related condition hydrocephalus - a build up of cerebrospinal fluid putting pressure on the brain, causing additional difficulties.

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This year's Herald Christmas Appeal will back the work of Spina Bifida and Hydrocephalus Scotland (SBH) which has been working for just over 50 years to help children, young people and adults affected by the conditions, as well as supporting their families and carers.

The charity helps people from the moment parents-to-be are told their child may have the condition right through into adulthood, where those affected may need help to find work or other meaningful activity, mobility help, social and emotional support or financial advice.

It is there when parents first get the news and are asked to wrestle with a heart-breaking decision about whether to proceed with a pregnancy.

Around one in 1000 pregnancies will be affected and SBH Scotland currently offers help and support to more than 3,500 children, young people, adults and carers.

As the condition is relatively little known, and spina bifida has no known cause and no known cure, they are likely to have many questions - but in some cases are given little more than a leaflet and a deadline for deciding on the fate of their child.

The condition itself is distressing. Babies are born with a gap in their spinal column, which can usually be closed by surgery, but their nervous system will already have been damaged.

The charity is there when their child is born, which is usually when the severity of their disabilities will become clearer and there is much to take on board. It works with children starting school, and moving from primary, supports teenagers in group and one-to-one work and helps young adults negotiate the difficult transition from children's to adult services.

SBH works with staff in education, health and social services to help increase understanding of the challenges faced by those affected and works in partnership with the health service to run joint clinics in Edinburgh, Glasgow and Aberdeen.

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The work is almost entirely self funded and SBH Scotland plans to put money raised by Herald readers towards the cost of an Infant Support Worker who will be able to provide intensive support to all families affected. And it campaigns on relevant issues such as benefits assessments, the need for better and clearer messages to be given to families at diagnosis, to the campaign to see Scotland become the first UK country to fortify flour with folic acid - which is known to cut the risk of spina bifida in a pregnancy by 72 per cent.

Over the festive season, we will aim to tell you more about the fantastic work of this charity which originally grew from the efforts of just a few parents but now provides lifeline services for thousands.

These are disabilities which can affect any pregnancy. They are life changing conditions and we are urging every reader to dig deep and consider supporting their work.

"We look forward to working in partnership with the Herald and thank the public for helping us this far. We ask that 'with a little help from our friends' we can continue to provide specialist support for the next 50 years," a spokeswoman for SBH Scotland said.

You can read more about the charity's work in the coming weeks. But you can donate now - by text, phone, online or by post.

See the coupon below for details:

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