Young carer Shauna Tighe was three years old when her brother Daniel was born.

He has the rare genetic Sotos syndrome, and she grew up helping her sibling out of love.

Shauna (14) wakes at around 6am to help Daniel get ready for school, and once her school day finishes, she’s there to play with him, comfort him and get him ready for bed.

Shauna, from Tallaght, Dublin, is one of thousands of children caring for loved ones in the home and without her support, mother Sinead (45) would find her full-time caring role for her son too overwhelming.

Daniel (11) is intellectually disabled and non-verbal. Though he possesses a playful personality and an endearing smile, Daniel is very strong and he often hits and slaps his mother, unaware of his actions.

But Shauna is there to calm her brother down. The two share a sibling bond that seems unbreakable.

“Daniel is my only sibling,” Shauna says.

“I don’t have many cousins either, he’s the only one there and I love my brother, so I love helping him.

“It can be annoying if he wakes up in the night but I know he doesn’t think in his head to wake up.

“But it’s hard with school. If I have a long day – and now I’m in Junior Cert year – it can be tiring at times.

“But no matter how tired I am, I always help Daniel. I’d do anything for my brother.

“Young carers in school need more leeway with homework, small things like that. I’d not ask for major things – more time if needed in exams – just an understanding of our lives.

“I feel like even simple things like counselling for young carers would help, so they don’t feel they’re alone and it helps to know others are going through the same.

“There might not be a lot of us, so to bring young carers together, could help.”

Sotos syndrome is a disorder characterised by overgrowth in childhood. Daniel is already as tall as his mother.

Children with the condition have learning disabilities or delayed development of mental and movement abilities.

Shauna often helps take her brother to a padded sensory playroom in the family home when he’s in a meltdown. The room has been designed to reduce the risk of injury to her brother and to help him relax.

The schoolgirl was awarded Dublin Young Carer of the Year in 2018, and she’s incredibly mature for her age.

“The way I see it is that I have had opportunities not everyone my age has had,” she says. “I’ve been in situations a lot of others my age might not be able to deal with. I feel like my brother has taught me not to take the small things for granted in life, that there’s so much more to life than material things.

“I’d feel I’d be a different person if I didn’t have Daniel in my life. I want to be a social worker and care for others when I grow up.

“Mum is great. I don’t know how she does it, she’s the main carer for Daniel, as I’m at school and dad (Keith) is at work.”

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