The father of a little girl suffering from an incurable illness has spoken about how she is the 'happiest kid you can meet'. Eight-year-old Isla Sykes from Linthwaite suffers from Sanfilippo Syndrome which is a rare and incurable condition that drastically reduces life expectancy.
The disorder means a change in one gene renders the child’s body unable to break down some carbohydrates. The rare condition is unseen at birth, however it causes developmental delay and is similar to the onset of dementia.
There is no cure for Sanfilippo Syndrome and it is up to parents to manage the condition as best they can. Sufferers of this condition can experience a whole range of issues including numerous ear infections or sinus infections, diarrhoea, headaches, sleep problems and behavioural issues.
As reported by YorkshireLive, Isla’s shock diagnosis was delivered by doctors just a few days before 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. 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."
She has a tendency to lash out, with three TVs damaged since the family moved from Marsden to Linthwaite recently. She suffers from sleep disturbance and can also display some aggressive behaviour but she is generally very loving as well.
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. 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 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 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."
