"When I was born, my parents were told that I had spina bifida and that they should put me in a home and go and enjoy their three other children.”
Chief executive of Spina Bifida Hydrocephalus Ireland (SBHI) Gerry Maguire might not be where he is today had his parents not defied the 'advice' they received all those years ago.
Spina bifida affects just under one in every 1,000 babies born in Ireland each year – the second-highest rate in the world behind Malta.
The condition is the most common neural tube defect, which causes incomplete development of the spinal cord. Indeed, spina bifida is the Latin for 'split spine'.
Those who live with it experience mobility issues, pressure sores, continence problems, social challenges and loneliness.
Some 64% of those living with spina bifida also have hydrocephalus – a build-up of cerebrospinal fluid in the brain.
Common issues arising from hydrocephalus include intellectual difficulties, behavioural problems, memory issues, and challenges to cognitive processing. If left untreated, it can be fatal.
The condition is often seen as a ‘hidden disability’ given that, in most cases, those who live with it often do no display any physical signs of disability.
There are unfortunately no cures for either spina bifida or hydrocephalus.
However, those living with the conditions can be empowered to overcome challenges and live full and fulfilling lives, as Gerry Maguire, who lives with spina bifida himself, knows firsthand.
#ALittleSupport could help us continue providing vital respite and recreation breaks to those living with SB/H.— Spina Bifida Hydrocephalus Ireland (SBHI) (@SBHIreland) October 26, 2021
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Having previously served as political adviser to former minister for disabilities Finian McGrath, Mr Maguire was appointed head of SBHI in July.
His message to Irish people with spina bifida and hydrocephalus is simple: live by your abilities, not your disabilities.
SBHI, formerly known as the Irish Association for Spina Bifida and Hydrocephalus, was established in 1968 by a small group of parents whose children had the conditions.
Their shared goal was to highlight awareness of the two conditions and support families, individuals and carers, work that continues to this day.
This week marks Spina Bifida and Hydrocephalus Awareness Week 2021.
The theme of the event is 'A Little Support' which focuses on what individuals living with spina bifida and/or hydrocephalus can achieve.
"My parents set about ensuring that I would live a full, independent life with no boundary on my potential," Mr Maguire said.
"You can achieve anything you set your mind to. Define yourself by your abilities, always," he said.
"Strive to fulfil your potential in life and remember, that if you ever need a little support along the way, that we at Spina Bifida Hydrocephalus Ireland are here to help."
- Spina Bifida and Hydrocephalus Awareness Week 2021 continues until Sunday, October 31.
- Anyone who wishes to get involved or lend support to SBHI can do so at: sbhi.ie/awarenessweek.