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Hydrocephalus Awareness Week 2021 - James' Story

5th March 2021

 

James' Story...

"For the first time I had a better comprehensive knowledge of the condition and immediately felt less anxious and afraid."

What was life like before you received support from Shine?

"James was born in December 2011, eight weeks early. Due to his prematurity, he also had pulmonary stenosis and secundum ASD, which required cardiac outpatient review, no immediate intervention was needed. When James was four months old, he was rushed to A & E as he was lethargic, and his head circumference was enlarged. He was subsequently diagnosed with hydrocephalus (which is managed by a VP shunt) and later with craniostenosis. I felt overwhelmed, scared, and lost. I had never heard of hydrocephalus and the neurosurgeon’s explanation was confusing. Google did not help and just added to my confusion."

How has Shine supported you?

"A friend of my mother’s told us about Shine. I contacted them and the health advisor Marie arranged to visit me at home. She brought a model of a brain and a shunt and explained in layman terms exactly what hydrocephalus was, and how it is managed. For the first time, I had a better comprehensive knowledge of the condition and immediately felt less anxious and afraid. I linked in with other parents on Facebook and established a supportive peer network.

Disability affects the whole family. James has an older sister Grace who was 7 when he was born. Grace was always worried about James. My Support Development worker (SDW) Dolores organized a drama summer scheme for both children with the condition and their siblings, which Grace was able to attend. The week was spent taking part in and working on a stage production of Annie. Grace had the opportunity to act, develop new skills and form friendships with young people with spina bifida and hydrocephalus, and their siblings. She grew in confidence as they learned from and supported each other. Grace could see the potential in everyone and became less fearful of James’ future.

Shine has continued to help me over the years. My SDW assisted me with benefits and provides ongoing advice in relation to other services/entitlements available.

I was given advice/support with James’ statement of special educational needs by Shine’s education advisor Kirsty. He has a full-time classroom assistant. A few years ago, James’ behaviour and concentration were extremely poor at school. The school’s advice was to send him to a special school for a 12-week intense course. I was reluctant to do this. However, with advice and support from Shine (they were able to give me a different perspective on the situation) I finally agreed. It was the best decision I ever made as James responded well and was able to return to mainstream school with much-improved behaviours and concentration.

James has come along way over the years, he is a bright confident young boy. He plays basketball and attends swimming lessons which he really enjoys. He is a popular boy with lots of friends and he loves to show his scars and tell the tales of his surgeries. If anyone in the family mentions an illness he is quick to tell us he's had 4 brain surgeries which always trumps our coughs and colds!

Shine’s help and intervention throughout James life has been invaluable and I cannot say enough fantastic things about the charity and everyone I have encountered from it."

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