Huddersfield girl, 8, with ‘dementia-like’ syndrome is ‘the happiest child you can meet’ – but only has years to live
The father of a terminally ill girl who has just a few years to live has said she is the happiest girl alive despite all her troubles.
Isla Sykes, eight, from Linthwaite, suffers from Sanfilippo Syndrome, a rare condition that manifests as developmental delay. Children with this genetic error in metabolism show no signs at birth. As the disease progresses, they slowly lose the ability to talk, walk, and eat. And in the cruellest twist of all, it’s often compared to the onset of dementia.
The rare genetic disorder of metabolism means that a change in a single gene makes a child’s body unable to break down certain carbohydrates (sugars), leading to serious problems with the brain and nervous system. There is no remedy. Four years ago, just four days after her fourth birthday, the diagnosis shocked the whole family.
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But Darren Sykes, a 42-year-old gas engineer, said that despite his daughter’s medical condition – the syndrome means life expectancy is between 10 and 20 years – he and his wife Nic, 37, try to stay as positive as possible. They say it was a complete and utter shock when she was diagnosed and they were devastated, but they look forward to each day, enjoying family time and making memories.
Darren said: “She was four when she was diagnosed. At first we noticed she was a bit late with her speech and we thought maybe she was deaf and had some small symptoms, including some hernias.
“Eventually the doctors put two and two together and gave her a full genetic diagnosis and we were told she had this rare disease. The worst thing is that there is no cure and the second is that there is nothing to do. It is difficult, you have to be with her all the time. You cannot leave her alone at all. She is very unsteady on her feet and does not cannot walk well, it is very difficult for her to walk.
And she tends to lash out with three damaged TVs since the family recently moved from Marsden to Linthwaite. She suffers from sleep disturbances and can also display aggressive behavior, but is also generally very affectionate.
Darren said: “She’s got a right hook on her and we had to get a TV protection shield. The one thing about this disease is she’s the happiest kid you’ve ever had in your life and it’s a blessing that she doesn’t know what’s going on.
“We have wonderful assistants taking her out and the staff at Castle Hill Special School are doing a fantastic job, she loves it there.”
And the family have been heartened by the response from their six-year-old son, Toby, who has set a goal of doing 3,000 push-ups this month to raise hundreds of pounds for Forget Me Not Children’s Hospice.
Toby, who is an avid Thai boxer, wanted to do something for his older sister and he and his father came up with the idea for him to do 100 push-ups a day in April.
Darren said after posting the details on Facebook last night, his son asked this morning how much had been collected – hoping £5 could have been donated. He said: “He was almost in tears when I told him £674 had already been raised. He’s a very active lad and really likes to do his push-ups.”
Toby’s fundraising page is here.