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Awareness Week 2019: Leo

On behalf of Leo, 8 months:

What does living with spina bifida and/or hydrocephalus (SB/H) mean to you? (Or your child?)

'Leo was born with hydrocephalus and had life saving brain surgery to have his shunt inserted at 3 days old. For us, living with hydrocephalus is the constant worry about shunt failures, more brain surgeries and as he is only a baby, not knowing what specific needs he will have.'

If you could make people aware of 1 thing related to SB/H, what would it be?

'Hydrocephalus does not define our baby. We were told that he wouldn’t survive post birth and if he did he would probably never walk, hear, see....So far he has reached all of his little milestones and he is and always will be perfect to us.'

What is your dream for the future?

'Our dream is for Leo to live a long, happy, healthy, independent life.'

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We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.


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