Dad shares heartbreak as daughter, 8, diagnosed with terminal dementia-like disease


Darren Sykes, 42, from Linthwaite, West Yorkshire, told of little Isla’s struggles with dementia-like Sanfilippo Syndrome and how her six-year-old brother Toby is helping her

Darren and Nic with their daughter Isla

A dad has shared the heartbreaking story of his eight-year-old daughter’s terminal diagnosis and how her little brother is doing everything he can to support her.

Gas engineer Darren Sykes, 42, first noticed that his daughter Isla was falling behind others her age when she was four years old.

The gas engineer, from Linthwaite, West Yorkshire, was concerned that she was struggling with talking and toilet training and took her to the doctor with wife Nic.

Medics ran several tests on Isla and confirmed that she had Sanfilippo Syndrome, a rare genetic disease that is incurable and mimics the symptoms of dementia.

Patients deteriorate throughout the years and eventually become unable to swallow.

Darren and Nic were both carriers of the syndrome, and were horrified to find out that Isla’s life expectancy was now between 10 and 20 years.







Toby, six, and his big sister Isla, eight
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mediadrumimages/Darren Sykes)

“We were kind of a normal family with two young kids, very happy and looking forward to the future but then everything changed,” said Darren.

“Before we got her diagnosed she was just behind in talking and she was just a little bit delayed.

“When we got the diagnosis, I was just pure heartbroken. It’s life-changing really.

“As far as we were concerned she was just a normal little girl, so to be told she would lose her faculties was heartbreaking.

“One of the things I was worried about was that I’d never be able to have a conversation with her.”







Isla and Toby on the way to Lapland
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mediadrumimages/Darren Sykes)







The siblings are two years apart
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mediadrumimages/Darren Sykes)

For the next two years, Isla progressed much like any other little girl but the beginning of the pandemic triggered a sharp decline.

“She was doing really well and we almost turned off to what happened,” said Darren.

“Then at the beginning of the pandemic when she was about six, we had to stay at home and she stopped school.

“It was like walking off a cliff. She lost her ability to use the toilet, she lost all her words.

“It’s like with an Alzheimer’s patient. The other day we went to wake her up and she said ‘I’m sleeping’ and those were the first words she said in a year.







Isla’s parents said it was “heartbreaking” to hear she would lose her faculties
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mediadrumimages/Darren Sykes)

“She can walk but not very far, so we have to keep her in a wheelchair for her own safety.”

Now Isla’s little brother Toby, six, has decided that he wants to help improve life for his big sister so is raising money by doing 100 press ups every day this month.

“He calls himself a little big brother,” said Darren.

“He’s done a lot of things to help her out, for instance when us adults did a fire walk he did a Lego walk to raise money, he did a little yard sale and was trying to sell his own toys to raise money for her.

“He’s really into exercising so we came up with the press-ups together. We set a goal of £500 and he was unsure as he didn’t think he was going to make that much.







Darren said everything changed after his daughter’s diagnosis
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mediadrumimages/Darren Sykes)

“It’s amazing – we have raised £1,620 so far. The morning after we set it up he came running in and asked if we had made £5.

“I checked it and it was over £600. He almost burst into tears he was so happy. He makes my heart swell, he’s such a lovely boy.”

The money will go towards the Forget Me Not Hospice, which sometimes looks after Isla overnight and takes Toby out on sibling days, where he meets other children whose siblings have life-limiting conditions.

“Toby knows that Isla’s illness is serious but he doesn’t know her life expectancy,” said Darren.

“He was asking the other day if he will get to look after her when she is old and that was really hard.”







Isla’s life expectancy is just ten to 20 years
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mediadrumimages/Darren Sykes)







The youngster cannot walk very far so has to be in a wheelchair
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mediadrumimages/Darren Sykes)

Darren’s advice to other parents whose children have terminal illnesses is to treasure every moment.

“We bought a caravan so we could go away with her for weekends and make memories together,” he said.

“We go to the east coast mainly in Yorkshire. My mum paid for us to go to Lapland at Christmas, and it was the best time.

“It was so magical and Isla was just in awe of it. We try to get away as much as we can and we are getting ready for the summer now.

“My main advice is to enjoy the moments that you have and every single minute that you spend with them and that’s all you can do.”

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www.mirror.co.uk

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George Holan

George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.

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