Tamworth children’s charity lights up Ruby’s life

A Tamworth girl with a rare brain condition now has her very own sensory room thanks to local children’s charity, Simon’s Heroes.

Ruby Bagshaw (7) has Hydrocephalus, a medical condition where excess cerebrospinal fluid (CSF) builds up in the ventricles of the brain.

‘We knew there was a problem when she reached 18 months old,’ explained her Mum Michelle, ‘her motor and language skills weren’t developing as they should.’

She underwent tests which included an MRI scan and was initially found to have an arachnoid cyst on her brain which risked blindness. Surgeons at Birmingham Children’s Hospital operated to drain the cyst in December 2011. Her parents raised concern a few months later because Ruby was experiencing severe headaches. A further examination revealed that fluid had built up again. Ruby underwent surgery to install a shunt, a thin tube that is implanted in the brain which drains away excess fluid into her stomach. This has helped to reduce the swelling and pressure. She has since endured multiple operations to maintain the shunt which became infected shortly after being installed.

Despite her condition, Ruby leads a relatively normal life. She is able to walk and has a reasonable level of understanding. She has a basic level of speech and is able to express her emotions. ‘You can see when she is happy and she tells you so,’ said Ruby’s mum, ‘she is rarely apart from her 2 spotty blankets and her tin container which she takes everywhere, they are her comforters.’

Ruby attends Two-Rivers School in Tamworth five days a week. The school caters for children and young people with special educational needs and behavioural problems. The school provides sensory facilities which Ruby really enjoys.

Ruby lives with her Mum Michelle, Dad Tim and Brothers Freddie (5) and Jack (12) in the family home in Bolehall. Ruby struggles being out and about in busy environments and wears ear defenders and uses a wheelchair in those instances. ‘They give her a sense of security and help to soothe her as well as enabling her to take part in family activities.’

Ruby suffers from anxiety and has periods where she hyperventilates when she becomes stressed and passes out. ‘It’s very difficult to calm her when she becomes stressed and that upsets us.’

She spends a majority of her time outside of school, in the family home, and up until recently had preferred to spend time in the kitchen, the hub of the home and where the family enjoy meal times together. This wasn’t conducive for a safe playing environment and so a small extension was built on to the kitchen and converted into a small play room for Ruby so that she can play safely in her favourite area of the house with her brothers.

‘We approached Simon’s Heroes to see if they could help us to furnish her play room with some sensory equipment which Ruby enjoys so much at school. We are very grateful for their gifts. Ruby absolutely loves her new toys. They help to stimulate her. Her new room has allowed her to develop her relationship with her brothers, she interacts with them in a way she hasn’t before, and it is helping her personality to emerge.’

Michelle Bagshaw.

 

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