Helen's Blog

Mother of survivor


As we walked to nursery each morning, I vividly remember two-year old Emily’s fascination with the sky, looking far into the distance and pointing excitedly at the aeroplanes overhead, and at the vapour trails running through the clear blue skies. It was one February, when, seemingly without cause, I noticed a sudden and significant decline in her sight over a period of about two weeks. This, combined with a mild squint that I didn't recognise led me to book her first eye test, and I gave idle thoughts to the difficulties inherent in keeping spectacles on an active toddler’s face, surely the most likely outcome? However, the day before her appointment, Emily came out in a rash. Childhood chicken pox was the diagnosis, and I endured a frustrating two weeks cooped up in the house with an itchy and grumpy toddler, who seemed to alternate between intense tiredness and headaches, only to perk up minutes after administration of Calpol, the wonder drug of childhood! 

During this fortnight with Emily, I became increasingly concerned about her sight – and then about my own sanity as I became more and more sure that I was spotting signs of serious sight issues, only to be reassured repeatedly by my laughing friends that it was nothing more than normal toddler clumsiness and capricious behaviour. To reassure myself more than anything, I called in some favours and had a late Friday appointment with a friend of a friend, a consultant Opthalmologist. He had immediate concerns about the appearance of the back of Emily’s eyes, detecting signs that could be suggestive of increased pressure within her head, so by Saturday morning we were in Accident and Emergency at St Mary’s. Less than 48 hours after the first doctor had looked into Emily’s eyes, she was in neurosurgery at Great Ormond Street, with the surgeons operating to relieve the pressure in her head, and in an attempt to preserve what remained of her visions. By then, she could see very little at all, and had been diagnosed with a brain tumour. 

Sadly, Emily’s vision has not significantly improved over the last two years, and she is now registered as legally blind. She has no peripheral vision, no useful sight in her left eye, and about 20% vision in her right. Despite this, you probably wouldn't know if you met her: she copes remarkably well and has adapted almost seamlessly. I am under no illusions about how difficult life could be for her, and of the additional challenges that she faces, both now and in the future, but for now, she is managing in a mainstream school with an Educational Care Plan in place at school, plus the support of a one-to-one assistant whilst at school.  

Emily has sufficient vision to learn to read and write, but cannot comfortably read a font below 36 pt. At five, her books still have only a few words to a page, so her workbooks, texts, and worksheets all have to be enlarged to enable her to see the words clearly. She also sits at the front of the classroom (alongside her one-to-one) and uses a dome magnifier to help her see smaller marks or images on the page. She uses a sloped writing board in order to bring her work up closer towards her eyes, but despite this her own handwriting remains unusually large, to enable her to read back her own writing. She uses huge amounts of papers with just a few sentences per page, and can struggle to locate words and sentences in her writing as the volume of paper covered is so significant. Similarly, the enlargement of texts for her to read is also hugely labour-, time- and paper-intensive, and this will only get worse as she progresses through the curriculum, and will restrict her free reading and accessing the wider world of the written world, unless more economical alternatives can be found. 

I wonder if other parents are able to help, or have other ideas to suggest? Resources I have used to date include: 

  • Sensory Service within our home borough: they provide Emily with enlarged text reading books and come into school to offer practical advice on how to support Emily academically. Emily has a visually impaired teacher attached to her through the sensory service. 
  • CENMAC: a London-based service who loan equipment and adaptative technology to educational institutions. http://www.cenmac.com  
  • RNIB: Emily has books sent to her on a regular basis from their Giant Print library service. They also have texts available in Braille, and as talking/audio books for those who are unable to access texts visually. http://www.rnib.org.uk/services-we-offer/reading-choices  
  • Custom Eyes who tailor books for children with visual difficulties (though these are expensive to purchase) 
  • Blind Children UK: Emily was given funding for an iPad as she struggles to watch a television  screen from any distance.    


Load2Learn is a downloadable resource which has been recommended to me, but not yet used, for any ‘print-disabled’ children who might struggle to access the curriculum without assistance. Do any parents have experience of this?  https://www.load2learn.org/  

 I am also keen to encourage Emily to learn to touch type – do other any children do this? At what age did they start and what programmes or websites did they use? 

I would be delighted to be in contact with other parents asking similar questions, and facing similar challenges. I want to ensure I do my very best to support Emily in accessing the world in which she lives, and in seeking to minimise the inevitable impact her brain tumour diagnosis and resulting disability has on her life, her learning, and her future.