It is unlikely their children will live beyond 13 as there is

Heartbreak of parents whose two children

‘The https://www.thebeastmark.com disease is so cruel’:, aged 4 and 7, have childhood dementia”It is heartbreaking knowing he will forget what we look like, there are just no words to describe it,” Lucy moncler outlet uk Carroll said03:59, 7 MAY 2018Updated09:07, 7 MAY 2018Mum Lucy has opened up about the family’s heartbreaking battle with the disease

moncler mens jackets Their two youngest children suffer from Batten disease, which is a neurodegenerative disease of which dementia is a symptom. It is unlikely their children will live beyond 13 as there is currently no cure. moncler mens jackets

monlcer down jackets It has left their son, Ollie, seven, in a wheelchair, unable to speak, and unable moncler outlet sale to see. His parents are terrified of the inescapable day that he forgets what they look like. monlcer down jackets

moncler sale outlet His younger sister Amelia, four, was diagnosed with the illness a month after Ollie. moncler sale outlet

However, for now, her symptoms have been halted after Lucy, 33, and Mike, 34, fought for two years to get their children on to a clinical moncler jacket sale trial at Great Ormond Street Hospital.

(Image: MEN Media)

moncler outlet Lucy, a full time carer for Ollie and Amelia, who have two older brothers, Danny, 11, and Micky, nine, has opened up about the family’s heartbreaking battle with the disease in the hope of raising awareness, and to get message out that ‘dementia strikes children too’. moncler outlet

moncler outlet store “Ollie was born completely healthy,” she told the MEN. “He was hitting all of his milestones, he was potty trained. moncler outlet store

cheap moncler coats “When he was around two and a half we started to notice a moncler sale speech delay. We mentioned it to the health visitor, but one of our older sons had the same thing and had caught up by the time he started school so we were told not to worry. cheap moncler coats

moncler sale “He was always falling over and bumping into things as well, but he was a little boy and the health visitor said it was normal. moncler outlet online moncler sale

cheap moncler sale “There was no indication that anything was wrong, and we can see why and how it was overlooked.” cheap moncler sale

moncler outlet online Lucy explained that it was around a year later that Ollie suffered his first seizure. moncler outlet online

“Heartbroken and angry” parents of two terminally ill children moncler sale outlet told NHS moncler outlet store will no longer pay for their treatment

cheap moncler jackets “He was in the bath at cheap moncler jackets the time. He stopped breathing, it was terrifying. Mike gave him CPR and brought him back, it was horrendous,” she moncler jackets outlet said. cheap moncler jackets

“We rushed him to hospital and doctors said he had a high temperature from a urine infection and that lots of children have convulsions brought on by a high temperature.

cheap moncler “They said it probably wouldn’t happen again, but within two hours of getting home he had another one.” cheap moncler

Over the next few weeks, Ollie began to have seizures every other day and his parents decided to take him to the Royal Manchester Children’s Hospital.

cheap moncler outlet He was diagnosed with generalised epilepsy and referred to a neurologist for further tests. cheap moncler outlet

buy moncler jackets “At this point, as parents, we felt like doctors knew something cheap moncler coats but weren’t telling us,” Lucy added. buy moncler jackets

“They were asking detailed questions about his speech and mobility, and they wanted him to walk so they could Cheap Moncler Jackets watch him.

“We went to Ollie’s GP and requested his medical records and looked at all the tests he was having. We did some research and came up with a list of five things they were testing for and Googled each one.