Heartbroken family realised ‘cheerful’ toddler was ill when he stopped 'smiling and laughing'

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A grieving mother from South Yorkshire is taking 10,000 steps a day to raise money for charity, one year on from losing her toddler to an aggressive brain tumour.

Nicole Harrigan, 26, is doing the challenge to raise vital funds for Brain Tumour Research after her son, Sylas died from a grade four medulloblastoma brain tumour in February 2020.

Medulloblastoma is the most common high-grade paediatric brain tumour, which is more common in boys than girls.

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Nicole, who is from Barnsley said she and her husband, Nils thought something was wrong with their son in October 2019, when he was 17 months old.

Sylas with mum Nicole in hospital. Picture by Brain Tumour Research.Sylas with mum Nicole in hospital. Picture by Brain Tumour Research.
Sylas with mum Nicole in hospital. Picture by Brain Tumour Research.

She said: "He was usually such a cheerful baby but we noticed that he was barely smiling or laughing anymore.

"We thought, at first, he might have been teething. He was also struggling to settle at night, which wasn't like him.

"Then we noticed that his balance was off and he was also and he was also being sick."

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Superbaby Sylas. Picture by Brain Tumour ResearchSuperbaby Sylas. Picture by Brain Tumour Research
Superbaby Sylas. Picture by Brain Tumour Research

After going back and forth to the doctor, they still couldn't find out what was wrong with their child until they were brought to Chesterfield Hospital a few days later where detailed observations were carried out.

That was when they were given the most devastating news - that Sylas had a golf ball-sized tumour on his brain.

Nicole said: "We were in complete shock. I couldn't understand how this could be happening to our precious baby."

Sylas was then taken to Sheffield Children's Hospital where he would undergo emergency surgery due to a build-up fluid on his brain.

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Sylas cake smash. Picture by Brain Tumour ResearchSylas cake smash. Picture by Brain Tumour Research
Sylas cake smash. Picture by Brain Tumour Research

The operation to remove some of the excess fluid went well, but he was in theatre again a few days later for major surgery to remove the tumour.

Stylas' surgeon managed to remove around 50 percent of the tumour but he was taken into theatre again for another major operation to debulk the remainder of the tumour.

But despite having removed most of the tumour, his midbrain had been damaged in the process.

After another MRI scan, it confirmed that the damage to his brain was extensive and he wasn't going to get better. Nicole and Nils then decided to bring him home on November 9, 2019.

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Devastatingly, in February 2020, Sylas’ health started to deteriorate and he was having fits. On 20 February, his parents took him back to hospital and the following day the family was given a big, private room, as they prepared to say their goodbyes. He sadly passed away the next day.

As Nicole approaches the first anniversary of her terrible loss, she is joining thousands of other fundraisers around the country and putting her best foot forward in February, by taking part in a 10,000 Steps a Day in February Challenge.

Nicole said: “It will be really poignant, as it will be one year since Sylas’ death. I’ve always enjoyed walking but haven’t done much recently, so this will be motivation to get out of the house and do something positive. I’ll be joined by my friend, who lost her nine-year-old cousin to a brain tumour. As always, my husband and absolute rock, Nils, will be supporting me.”

“I feel that this challenge is something that I can still do for Sylas, having been stripped of my motherly duties and looking after him.”

In these confusing and worrying times, local journalism is more vital than ever. Thanks to everyone who helps us ask the questions that matter by taking out a digital subscription or buying a paper. We stand together. Nancy Fielder, editor.