‘Despite it all... my Isla is still the happiest girl alive’
THE dad of a terminally ill girl with just years to live has told how she is the happiest girl alive despite all her problems.
Eight-year-old Isla Sykes from Linthwaite suffers from Sanfilippo Syndrome, a rare illness that manifests itself in developmental delay.
Children who have this genetic error of metabolism show no signs at birth. As the disease progresses, they slowly lose the ability to speak, walk, and eat. And in the cruelest twist of all, it is often likened to the onset of dementia.
The rare genetic metabolism disorder means a change in a single gene makes a child’s body unable to break down certain carbohydrates (sugars) which leads to serious problems in the brain and nervous system. There’s no cure. Four years ago just four days after her fourth birthday the diagnosis sent the entire family into shock.
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.”
Darren added: “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.”
And the family has been cheered by the reaction to their six-yearold 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 and 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 his son asked in the 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.”
Isla’s dad Darren