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Mia's Story - Christmas Campaign 2017

    • Shine Education Project 2

For years, Benny and Bella, our mascots have helped children to learn about the complexities of their condition.  The characters, who have their own series of story books tackling important life stages are just one of the resources Shine is developing to support children, families and professionals to achieve better outcomes in eduction.

One of our Education Advisers was invited to visit a nursery school to support Mia, a little girl with hydrocephalus…

"I was contacted by Mia’s* mum and invited to attend her nursery school and speak to the staff so they were able to understand Mia's condition, hydrocephalus.  

I noticed some of the struggles that the family were experiencing straightaway, such as, Mia’s difficulty with noise and anxieties about where to leave her coat and lunch, which spiralled when it came to saying ‘goodbye’ to Mum, albeit only for a few hours.

I was able to observe this little girl in her nursery setting, engage with the other children and introduce Benny, the bear with hydrocephalus both in the form of a story book and little Benny himself. These resources are invaluable and encourage children to connect with this little bear.

I was also able to explain some of the learning effects of hydrocephalus to staff, show them a shunt, discuss strategies and offer educational resources to ensure that Hannah reaches her full potential.

This little girl started school and armed with the resources and information that had been collated; she appeared to sail through her first year at school, with little obvious signs of the disparity between her and her peers.

Year 2 was different. Mia became anxious, struggling with leaving her mum, requiring constant reassurance and with an acute obsession about time – all traits seen in children with hydrocephalus.

Mum recently decided to take her child out of school and spoke at length with the Local Education Authority to see if she could obtain a placement within a school with a medical unit to address her hydrocephalus needs and other genetic issues that were impacting on her progress.

I was invited to attend a recent multi-disciplinary meeting with the headteacher and special education needs staff from the proposed and requested school attended. The meeting progressed well, giving me the opportunity to explain how and why hydrocephalus impacts on learning, strategies to help and the importance of 1:1 for this little girl and the differentiation of her work.

The meeting was an excellent exchange of thoughts and ideas, with an invite for me to speak further to the support assistants on another date, looking at how work could be effectively differentiated. It was suggested how the school could support this little girl and encourage her to move forward to returning to her education on a gradual basis.  By the closure of the meeting, it was agreed with Mum, that her daughter would return to school that Friday, before half term, but just for a few hours. Her timetable would ensure that she would not have to go into assembly every day, but to use that time effectively to make her feel more secure within the classroom and to look at the forthcoming tasks that were going to happen during the day.

Today I received a call from Mum, who thanked me for all my help and input into the meeting, and confirmed that her daughter had been offered a place at the proposed new school!”

*name changed to protect identity

[This is an outcome which involved the input of many professionals, all working to ensure the best for this little girl. The Education Health Plan that was in situ, was not necessarily working to her best advantage and with the input of Shine and the knowledge of this family and child, through regular contact, we were able to highlight how objectives on the EHC would or would not work.]


Shine’s Christmas Campaign will help teachers unlock potential in children like Mia. 

Shine is creating life changing resources and support for children with spina bifida and hydrocephalus, their families and the professionals who work with them.

We help teachers to find creative ways to help boys and girls like Mia to learn and gain confidence, by breaking tasks into easy steps, using colour to sort information, extra time for tasks, and support to catch up after hospital stays.

If you've been affected or inspired by Mia's story, you can learn more about the aims of the project and make a donation to support this pioneering work by visiting our Just Giving page before midnight Sunday 31st December 2017

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