Its hard for them too. For the second time, our world fell apart. Today is Ollie and Amelia's Great Grandma's (my grandma) Birthday. THE touching picture of Prince Harry down on his knees to hug little Ollie Carroll went global. For those who are new to the page, both Ollie and Amelia receive enzyme replacement therapy at Great Ormond Street Hospital, London via a brain infusion. The disease changed all that in a short time. About two to four of every 100,000 births in the United States are affected by Batten disease. Before Ollie lost his speech, he asked to go for a flight in a helicopter or plane, so it would be lovely for him to have this experience. She was perfect in every way. 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. My heart breaks for her as. 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. Batten disease prevents children from creating an enzyme that stops waste from building up in the brain. The most important thing now is to make every moment count. Tomorrow, 28th February, is Rare Disease Day. Ollie and - Facebook Amelia and her brother Ollie have both been diagnosed with Battens disease, Amelia Carroll, eight, and her older brother Ollie, 10, were diagnosed with 'childhood dementia' in 2015, Lucy and Mike Carroll with Amelia and Ollie, then aged three and five. Their children, Ollie, six, and Amelia, four, both have the disease. THIS is what Ollie's Army is all about! Right now, Batten disease has no cure it is always fatal. Parents may notice early symptoms including vision problems or seizures. Later on in the disease, children become blind and get dementia and batten disease suffers will typically die by their late teens or twenties. Hes a normal, happy and lovable boy that at just the age of 4 was diagnosed with Batten disease. Batten disease is a neurological disorder that occurs in children. The Carroll family recently welcomed their daughter Renesmee into the world. In October, an EEG confirmed generalised epilepsy. 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. She is 4 now, running around, going to tap lessons, dancing, scootering in the street, just like a normal 4 year old. The Sun website is regulated by the Independent Press Standards Organisation (IPSO), Our journalists strive for accuracy but on occasion we make mistakes. In the early days, it was the worry whether their parents would be home . We were astonished that he briefly stood up to reach Prince Harry, but he obviously found strength somewhere. The treatment, which replaces enzymes missing from the brain of a child with Batten Disease, consists of four hour-long infusions, twice monthly. View our online Press Pack. The couple are now campaigning to have the treatment made available at Manchester Childrens Hospital. The FDA licenced the drug in April 2017 and the EMA in May 2017. Along with her husband (Mike) Lucy has set up Ollies Army, aimed at raising awareness for this rare disease. Parents Lucy and Mike Caroll, from Poynton, have witnessed Ollie lose his independence. If NICE say no, we can appeal, but we dont know what will happen to the childrens treatment at this point, its not something they can come off and go on again. In February 2015 they received the diagnosis of Batten disease and it floored them. She had only just turned two, shed been hitting all her milestones. Now they fear that Amelia could lose her eyesight too if they don't raise enough money for a pioneering new treatment. So, how did the NICE representation come about? Ollie is still our smiling, beautiful boy. Receiving the news a second time was even worse than the first. It is; we are fortunate in that BioMarin have said that they will continue to pay for the treatment whilst NICE are taking the decision whether to fund or not. 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In the US, the doctor writes to the insurance company to explain the situation and in some cases just 16 days later the child is in hospital for surgery to have the port inserted into their head. Why not fundraise for the Greater Manchester Foundation. Read Amelia's story - Ollie's Army Her older children are clear, but are still affected by the impact of the disease on the family. We dont know how long we have left with our children. But in 2015, we learnt our beautiful princess also had Batten disease an incurable, fatal disease with a life expectancy of six to twelve years. There is a special harness that we can use to tie him to us with his feet on our feet, so that we can kick the ball and he can play. Early symptoms can be subtle, typically starting around the age of 3 when carers and doctors potentially notice slower than average speech development and clumsiness or stumbling. But the health visitor also said oh boys are clumsy and the speech is nothing to worry about at this stage. The report is so negative, they discuss funding the healthier children and not the sicker ones or there has been talk of having start and stop markers in place for the treatment, but how hard will that be to make the call to pull the treatment and let a child deteriorate? Contact us to find out more about how you can help, our fundraising events, celebrity supporters and more. LATE Infantile Batten Disease is a neurological disorder that occurs in children between the ages of 2 and 4 and is an early onset form of Batten Disease. The Message Behind the Coronation Anointing Screen, Kate Middleton and Daughter Wore Matching Crowns, The Meaning Behind the Colors at the Coronation, What Camilla's Coronation Crown Will Look Like. According to NINDS (National Institute of Neurological Disorders and Stroke), the disorder will usually start to appear in children between the ages of 5 and 10, who may have been previously completely well. Ollie, Amelia and every other child with Batten disease deserves a chance of living life to the full in the time they have. Lipopigments accumulate in the tissues of the body, resulting in the death of neurons in the brain, retinas, and central nervous system. So the biggest, starkest evidence that the treatment is working can be seen in Amelia. As Ollie and Amelias parents, were dedicating our time to raising awareness of Batten disease and hoping to one day find a cure. Background to disease: Batten disease is a fatal, inherited disorder of the nervous system that typically starts in early childhood. In the face of this, Lucy is an extremely charismatic, positive, determined young woman with four beautiful children, two of whom, Ollie 7 and Amelia 4, have Batten disease. She goes to kindergarten and her speech is affected a bit, but not a lot. Now it is the fortnightly trips down to Great Ormond Street Hospital for both Ollie and Amelias treatment (pending NICE approval the pharmaceutical company BioMarin are continuing to pay for the children in the UK to receive the very expensive treatment). "Amelia's eyesight is already deteriorating and we know that she could be blind by October-November time.. "It isn't just her sight - it will have a huge impact on the quality of her life. The evidence is not as dramatic as Amelia because he was older and more advanced when he was first treated, however in terms of quality of life it is very, very compelling. But on arrival, we were asked to leave the boys in the waiting room. He can no longer walk, talk or see. Explaining that they have Batten Disease and that this was ultra rare to our surprise Bob said he had heard of Batten Disease and at that moment it . C/o I Love Media Limited, Mike and Lucy Carroll set up Ollies Army to raise awareness and funds for children with Batten Disease. Amelia has not yet seen these effects as she receives cerliponase alfa every two weeks. There is no cure. When the neurologist told us it was Battens disease, type CLN2, it was devastating. When Ollie was three-and-a-half years old, in the bath, he had a seizure. To inquire about a licence to reproduce material, visit our Syndication site. Join the mobile Manchester community, About usOur StoryWhat We DoSocial ResponsibilitySustainabilityMeet the TeamContact us, Licensing Information Terms and ConditionsPrivacy PolicyMake An Editorial Complaint, AdvertiseOut-of-Home MediaAdd a ListingAdvertising Terms and Conditions, See All NewsMost PopularCommunityLifestyleCultureBusinessPropertySponsored, See All EventsFree Things To DoMusic & GigsTheatreFamily Friendly Things To DoGuided ToursWedding & Private Event Venues, Kids and BabyT-ShirtsHoodies and SweatersMugs and BottlesTote BagsPrints & PostcardsAccessories, Environmental PolicyEthical PolicyPrinting MethodDelivery InformationFAQs, Copyright 2009 2023 I Love MCR All Rights Reserved. "As soon as Ed walked into the room yesterday and spoke Ollie's eye lit up and a smile spread across his face. I went on the new-look University Challenge - the questions are so hard I could have cried, We went behind the scenes on TV's toughest quiz show, The 'forgotten' Mancs who got their own new estate - in the middle of the countryside, 'I would never want to be associated with Glossop. We are very proud of him and want him to have the best possible future. We use your sign-up to provide content in the ways you've consented to and improve our understanding of you. We fought for compassionate use of a drug that shows positive signs of slowing down Batten disease. They haveslammed the decision by Nices preliminary decision to recommend the treatment cerliponase alfa should no longer be funded on the NHS. For further details of our complaints policy and to make a complaint please click this link: thesun.co.uk/editorial-complaints/, Ollie lives with mum Lucy, dad Mike, plus brothers Danny, Mickey and Amelia, Prince Harry knelt down and spoke to Ollie, Mum Lucy says Ollie is an inspiration to everyone who knows him, Make-A-Wish charity took the family to Disneyland, Ollie loves football and uses a special harness to play, The awards bash where Ollie met Harry was hosted by charity WellChild, Ollie is always smiling and holding his hands up for a high five, Awards bash where he met Harry was hosted by charity WellChild, Ollie was born healthy and everything was fine until he was two, Heartwarming video of terminally ill six-year-old Ollie Carroll enjoying Ed Sheeran's song Perfect so much it brings him to tears, Amelia, like her big brother Ollie, six, suffers from the neuro-degenerative disorder. They lose their sight and the ability to walk, talk and eat, becoming totally dependent on their caregivers for the rest of their short lives. Where to go for a bloody good bottomless brunch in Manchester, The unbelievable story of the defiant woman who changed the world, Unleash your inner superstar at the best karaoke bars in Manchester, Gigantic 28-floor Sparkle Street development to redefine the Manchester skyline, How Manchesters multinational neighbourhood Curry Mile has changed over the last decade, The influencer taking on incredible 456-mile challenge for children in desperate need, Get the celebrity treatment at King Street Groomings incredible salon. Theyre focusing on the love and happiness of Renesmees birth and the happiness they have as a family. We would love for Ollie to be able to experience swimming with Dolphins. Ollie's Army Battling Against Battens - Facebook The life expectancy of a person with the condition is around 13 years, although some receive a brighter prognosis. But we were told there was nothing to worry about. When Ollie was three-and-a-half years old, in the bath, he had a seizure. Amelia and her brother Ollie have both been diagnosed with Battens disease (Image: Irwin Mitchell). Amelia is obsessed with birthdays and parties, so it would be lovely to be able to throw her a special party. Over time, the disease robs children of their speech, mobility, eyesight and ability to swallow, whilst causing uncontrollable seizures and movement disorders.