The dad of an eight-year-old girl who has just years to live said she is the 'happiest girl', despite her medical condition.
Isla Sykes from Linthwaite, West Yorkshire, suffers from the rare illness Sanfilippo Syndrome, which manifests itself in developmental delay similar to dementia. No signs of the disease are shown at birth, but as it progresses, it means that the child will slowly lose the ability to speak, walk, and eat.
The rare genetic metabolism disorder, which is often likened to the onset of dementia, means a change in a single gene makes a child's body unable to break down certain carbohydrates (sugars). This leads to serious problems in the brain and nervous system and there is no cure, reports YorkshireLive.
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Isla was diagnosed just four days after her fourth birthday. But Darren Sykes, a 42-year-old gas engineer, said that despite his daughter's 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 look forward to each day, enjoying family time and making memories. Darren said: "She was four years old when she was diagnosed. At first we noticed she was a little behind with her speech and thought she might be deaf and she had a few little symptoms including a couple of hernias.
"Eventually the doctors put two and two together and gave her a full genetic diagnosis and we were told she was suffering from this rare disease. The worst thing is that there's no cure and the second is that there's nothing you can do. It's difficult, you need to be with her all the time. You can't leave her on her own at all. She is very unsteady on her feet and can't walk well, it's very difficult for her to walk."
And she has a tendency to lash out - three TVs have been damaged since the family recently moved house. The family say she suffers from sleep disturbance and can also display some aggressive behaviour, but she is generally very loving.
Darren said: "She has quite a right hook on her and we've had to get a protective shield for the TV. The one thing about this illness is that she is the happiest kid you have ever known in your life and it's a blessing that she doesn't know what is going on.
"We have wonderful helpers who take her out and the staff at the specialist school at Castle Hill do a fantastic job, she adores it there."
The family has been cheered by the reaction to their six-year-old son Toby who has set a punishing target of completing 3,000 press-ups this month to raise hundreds of pounds for Forget Me Not Children's Hospice. Toby, who is a keen Thai boxer, wanted to do something for his older sister. He and his dad hit on the idea of him doing 100 press-ups a day during April.
Darren said after putting the details on Facebook last night his son asked this morning how much had been raised - hoping £5 might have been donated. He said: "He was nearly in tears when I told him £674 had been raised already. He is a very active lad and really enjoys doing his press-ups."
Toby's fundraising page is here.
