Sean Paul King, 5, East Kilbride, was one-day old when he had his first operation for spina bifida - an incurable and unexplained birth defect where the backbone does not fully develop, often leaving a hole which requires closing.

At five days old, Sean was diagnosed with the related hydrocephalus and had his second operation. This was to drain a build up of fluid from his brain. He also suffers from Crohn’s disease, seizures and has only one functioning kidney.

Sean lives with his mum Amanda, grandparents Mary and Hugh Paul, and sisters Kelsey, 9, who is autistic, and Karly, 7. They provide him with plenty of support, but the family also depend on the charity Spina Bifida Hydrocephalus Scotland (SBH Scotland), which is the beneficiary of this year's Herald Christmas charity appeal.

“My parents are great, but my other lifeline to cope with all the turmoil and stress is SBH," Amanda says. "I have a specialist support worker who visits us at home every week and in hospital when Sean is admitted.

“They take the time with the children and make sure the family are getting the help they need as well. They go much further than what their job requires. I don’t know what we’d do without them. They are helping to give my wee boy a quality of life I never thought possible.”

SBH provides medical, educational, social and financial support to people with spina bifida and hydrocephalus, and their families. This is made possible through donations, sponsored challenges, trusts, events and volunteers.

The program set out by SBH Scotland is more intensive for the youngest of those with the condition, to help prepare them to be as independent as possible when they are older, though they also offer lifelong support to anyone in Scotland suffering from spina bifida.

In August Sean started primary school - a day his mum Amanda never thought would come. SBH Scotland help make this possible by sending his specialist support worker to school with him.

As well as providing the medical, sensory and developmental support that was there before school, Sean’s support worker now also helps him keep up with his letters and numbers. Amanda says Sean likes it so much he often doesn't want to come home.

“He’s been mixing well with other children but he prefers small groups. Any more than that and he gets distracted and goes into a world of his own. It’s much better than nursery. He comes home happy now.”

The family support worker who works with Sean for SBH Scotland has carried out dedicated one-to-one weekly support since Sean was two with exercises carried out by the support worker aim to increase confidence and encourage movement.

Amanda says Sean takes everything in his stride. : “He spends a lot of time in hospital or the doctors, but even when he’s in pain, he just keeps smiling. I’m so proud of him.”

Sean also attends SBH Scotland family groups with his mum and two sisters. This allows the family a chance to meet others with similar experiences as well as being the only time Sean and both of his sisters all play together.

As well as support workers, SBH Scotland offer assistance with applying for benefits, housing adaptions and relevant grants. On top of this, they are trained in acting as advocates to parents on hospital visits and school meetings.

The service Sean has had most support from offers weekly one-to-one support to 0-8 year olds across Glasgow and Lanarkshire. Since it was set up, 35 families have benefited from this intensive work.

Less than 1% of the charity's funding is statutory, making it and the families who benefit from its existence reliant on money from the public. Your support can help this work continue - see the panel for ways to donate.