Who are Ollie and Amelia Carroll, what is Batten disease and have parents Lucy and Mike spken about NHS treatment?
THE touching picture of Prince Harry down on his knees to hug little Ollie Carroll went global.
Ollie and his sister Amelia have Batten disease – a terminal illness that means they cannot walk unaided, talk or play.
Who are Ollie and Amelia Carroll?
Amelia, like her big brother Ollie, six, suffers from the neuro-degenerative disorder late infantile Batten disease.
Every two weeks Ollie and Amelia, who need round-the-clock care, travel to Great Ormond Street in London for enzyme treatment.
The incurable disease robs sufferers of their ability to walk, talk and eat, triggers seizures - and most won't live beyond the age of 13.
Ollie has already been robbed of his speech, and Amelia will eventually lose mobility, eyesight and even the ability to swallow.
Lucy and Mike, who have two older sons, Danny, ten, and Mickey, nine, married in St Gregory’s Roman Catholic Church in September 2012.
They recently returned to the same venue to renew their vows.
Devoted parents, Lucy, 32, and Mike, 33, asked their daughter to plan their wedding day as she won't live to see her own special day.
What is Batten disease?
Batten disease is a rare life-limiting neuro-degenerative disease that affects children.
Just five or six children are diagnosed with the form Ollie has each year in the UK.
Sufferers are born apparently healthy before developing seizures and dementia.
They lose their vision and the ability to walk, talk and eat, becoming wholly dependent on their carers for the rest of their short lives.
The life expectancy of a sufferer is around 13, though some are given a sunnier prognosis. There is no cure.
The huge demands the disease places on carers can mean loss of jobs, financial hardship and poor health for carers, physically and mentally.
What have Ollie and Amelia Carroll's parents said their children's NHS treatment?
Lucy and Mike have hit out at the health watchdog over its decision to no longer fund their treatment.
They have slammed the decision by Nice’s preliminary decision to recommend the treatment cerliponase alfa should no longer be funded on the NHS.
The disease currently has no cure and scientists are desperately working to find one.
She said in February 2018: “We have always fought not just for our children but for all children with Batten disease. This will never stop.
“Today we are angry, disappointed and completely heartbroken."
What have Ollie and Amelia Carroll's parents said their children's condition?
In 2016, Lucy Carroll revealed the following about her family's condition...
Ollie was born healthy and everything was fine until he was two, when we noticed his speech wasn’t as good as other children his age.
But health professionals said he would catch up.
Soon afterwards, he started tripping over his own feet and became clumsy.
But we were told it was nothing to worry about.
Then, at three and a half, he had a seizure, which was incredibly scary.
Mike revived him with mouth-to-mouth after he stopped breathing. We were lucky he survived.
He started having seizures every few days, shaking his whole body.
An MRI scan at Royal Manchester Children’s Hospital revealed he had a small cerebellum, the part of the brain that controls gross motor skills, so they started testing for all kinds of things.
When the neurologist told us it was Batten disease, type CLN2, it was devastating.
We were in shock and cried a lot. We asked if there was any treatment, any cure, anything, in any country, that would help.
To hear that there was nothing was hard to take in, just heartbreaking.
That was in February 2015, when Ollie was still running around, talking and playing with his toys like a normal three-year-old.
The disease has changed all that in a short space of time.
Ollie now has to use a walking frame or a wheelchair.
He can no longer talk and needs to be fed by a tube into his stomach to get enough nutrients, although he can eat a little if we feed him.
Only as recently as March, Ollie was still able to take a few baby steps by himself but now he can’t stand up.
He can still swallow — which he has tested every two weeks, because if he has a chest infection or juice goes down the wrong way it could cause pneumonia, which could kill him.
His eyesight is deteriorating but he can still see at the moment and he has to wear a nappy.
Mike and I take turns sleeping with Ollie.
Sometimes he can’t get comfortable, sometimes he just wants cuddling and sometimes just wants his dummy put back in.
He goes to a mainstream school for a short time each day until he’s too tired.
He really enjoys it because he loves interacting with people.
The other thing he loves is playing football.
There is a special harness we can use to strap him on to us with his feet on our feet, so we can kick the ball and he can play.
It is hard for us emotionally but the older boys have witnessed the countless seizures, saw Mike do mouth-to-mouth on Ollie and they see the ambulances outside. It’s hard for them too.
Amelia was two when Ollie was diagnosed and soon after the news about our son, doctors told us there was a 25 per cent chance any of our children could also have Batten disease.
Blood tests revealed Danny and Mickey are in the clear but Amelia has it.
Getting the news a second time was even worse than the first.
We had no questions to ask — we already knew the answers.
You can’t yet tell anything is wrong.
She plays and runs around chatting, having fun with her toys.
She goes to pre-school and her speech is affected a little, but not much.
Amelia is a ticking timebomb.
Next month she’ll be the same age Ollie was when he had his first seizure and we’re watching her like hawks but she seems be doing fantastically at the moment.
All we can do is take each day at a time and take loads of pictures and videos.
The local community have been raising money for some alterations to our house and tradesmen have offered their time and skills, which is really touching.
We don’t know how long we have left with our children.
We’ve been told Ollie’s life expectancy is between six and 12 years.
The children give us our strength.
Ollie is always smiling and holding his hands up for a high five and he needs us to be strong, just as our older children do.
They are just as scared as us.
The Make-A-Wish charity took us to Disneyland and we travelled to London to see Ollie collect his WellChild Inspirational Child Award this week.
We were amazed that he briefly stood to reach Prince Harry, but he obviously found strength from somewhere.
He just got a good vibe from Harry, warmed to him straight away and wanted to hug him.
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Harry knelt down and spoke to Ollie in a normal way.
He didn’t talk down to him and was very interested and kind.
Ollie is an inspiration to everyone who knows him.
We are very proud of him and want him to have the best future possible.