'I was with him one day and saw him have a seizure – it broke my heart'

Just over a year ago, Zoe Clarke’s life changed forever.

The 18-year-old school student was overjoyed to become a godmother for the first time.

However a few days after the birth of her godson Samuel, she and her family were given devastating news.

Doctors informed the family that Samuel had been born with complex chromosome problems.

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These left him with profound mental and physical disabilities, including heart problems, epileptic seizures, and West syndrome, which manifests itself as infant spasms.

They were told that Samuel would be unable to sit unaided or communicate in any way. He may never fully recognise who his family are.

His life expectancy remains unknown and he requires around-the-clock care.

The news knocked the breath out of Zoe and her family; Samuel’s father Ger said it left “the body cold and emotions dumb”.

But despite the shock of the prognosis, Samuel has been an unending source of joy, endless love and happiness for Zoe and her family.

He’s also inspired Zoe — both personally and creatively.

The student, who is currently studying for her Leaving Cert, is an accomplished musician.

She started playing the guitar at five years of age and since then her musical interests have grown; she regularly performs on Dublin’s Grafton Street as crowds bustle by.

Zoe decided to write a song for Samuel after she witnessed her godson having a seizure.

“I was with him one day and saw him have a seizure — it broke my heart,” she said.

“It kept me up all night thinking about it. And the thought of Samuel having a seizure still wakes me up.

“One evening when I couldn’t get back to sleep or stop thinking about him, I wrote this song. I came up with the lyrics first and then added the melody.”

In the song, Zoe addresses the lack of insight people have about Samuel’s condition.

Often people will try to reassure her that he is ‘grand’ when she knows the turmoil he’s experiencing when he is having a fit.

She writes about comforting him, and holding him close.

She also described the pride she feels when holding Samuel in her arms, how much she cherishes his tiny feet, smile and ginger hair, and how much he means to her.

She writes; “You’ll always be my star, no matter where you are.”

After recording the song, Zoe sent it via a voice note to Samuel’s mother, her aunt Sharon.

“They really loved it,” she said. “So I made contact with Beardfire Music.”

The music production company has previously worked with Cat Power, Nick Cave, INXS, John Cooper Clarke, Mary Black, Billy Bragg, Mundy, and Leslie Dowdall.

“They had seen videos of me busking and we recorded the song live with them,” Zoe said.

Zoe hopes her song will encourage other godparents, parents, siblings, friends, and relatives who have a loved one in care.

“I wanted to share the story and reassure people,” she said. “It can be very lonely and very difficult going through something like that.

“So I just wanted to let people know that they are not alone and there are other people out there, thinking of them. I wanted the song to touch someone in a similar position, and make them feel better.”

Zoe hopes to study music after her exams next year, and has already performed in well-known venues throughout Dublin including The Art Cafe and renowned venue Mother Reilly’s in Rathmines. She says Coldplay, Billie Eilish and Ed Sheeran are her influences and would love to play the 3Arena in the future.

But she is adamant about what makes her happiest — being Samuel’s godmother. “I love being his godmother — he always has a smile on his face and a laugh. He’s the best.”

No Matter Where You Are is available on Spotify via Beardfire Music

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