Meet Mylo: A new kids' book highlights abilities and raises awareness of Spina Bifida

Meet Mylo is the first in a series of short stories supporting children living with spina bifida and/or hydrocephalus

India Jones at the most recent SBHI sports day in 2019

A new children’s book, launched by Spina Bifida Hydrocephalus Ireland (SBHI), has a dual aim – to highlight the importance of not letting a disability define you, while also promoting understanding and awareness of two very serious conditions.

Meet Mylo focuses on the unique relationship between dog Mylo and his two friends Michael and Mary who live with SB/H. The book is the first in a series of short stories supporting children living with spina bifida and/or hydrocephalus to better communicate key aspects of their conditions to those around them.

Around 40 babies are born with spina bifida each year in Ireland – one of the highest incidence rates in the world. One in 1,000 pregnancies is affected by hydrocephalus annually. Both conditions are often experienced together – in Ireland, 64% of those living with spina bifida also have hydrocephalus.

SBHI CEO Gerry Maguire says the multi-faceted nature of these conditions can make school life very difficult for children – challenges include accessibility and personal care needs. “A child with spina bifida will either walk with callipers – metal braces on their legs – or will use a wheelchair. They can’t bound up steps into a building. And although there may be a ramp, if it’s too steep the child won’t be able to negotiate it by him/herself. They have to ask for help, which doesn’t give them that bit of independence all children crave.”

Some children aren’t independent around toileting and require assistance from staff trained in the area of intimate personal care. “There are cases where parents have to go into the school to toilet their child during the day, which can be soul-destroying for a child. And if a child has a playdate and has to ask mum or dad for help with the toilet, that’s what other children will remember – rather than the fun they had. So it can lead to isolation,” says Maguire, adding that there can also be cognitive and behavioural difficulties associated with the conditions.

Describing Meet Mylo as “an eye-opener for everybody”, Maguire would like to see the book in all schools. “It gives a human face to children with these disabilities. It lets others see they are real, they have emotions and that disability doesn’t define them – they’re a person, defined by their abilities rather than their disabilities.”

Children, he says, are like sponges. “They lap up information. If we get rid of the mystique of disability from an early age, living with disability becomes much easier.”

• Meet Milo was funded by Applegreen Blossom Fund and Dublin Bus. 
• See https://sbhi.ie/meetmylo for more.

The facts about Spina Bifida

Spina bifida, the most common neural tube defect, causes significant mobility issues, continence problems and pressure sores.

Hydrocephalus, often a hidden disability, occurs when too much cerebrospinal fluid builds pressure in the brain – challenges arise across intellectual/behavioural/memory/cognitive domains.

During Spina Bifida and Hydrocephalus Awareness Week (October 25-31), SBHI (https://sbhi.ie/) will feature special content across their social media channels.

In a series of videos, service-users will speak about life-changing supports they’ve received from the organisation.