Home Health George, 5, is making a list of things to do with his...

George, 5, is making a list of things to do with his mother – while he is going blind with dementia

George Young was only three years old when he was diagnosed with Batten disease, a rare form of childhood dementia.

It is a condition normally associated with the elderly and incomprehensible to most parents.

His mother's world, Claire, became "upside down" when she was diagnosed.

According to the National Institute of Neurological Disorders, children with Batten's illness are likely to become blind, forced into bed and demented.

But rather than dwelling on the inevitable future of George, Claire is making the most of all that her son is still able to do.

Over the last two years, they have made a long list of extraordinary activities, which is why George is a little daring who loves thrilling adventures.

We met George for the first time in April 2018, so we came back to see how he was coming almost a year later.

"People always associate dementia with the elderly: when you put it in the context of a child, it seems absolutely heart-rending," said Claire, a Kenilworth lawyer.

Claire and George Young

"When it's your son, you can not understand it at all.

"George is still a happy little soul in himself but some of his symptoms have deteriorated.

"So we are making the most of the time we have with George, creating good memories and we will continue to do so for as long as possible."

George had been a happy and healthy child until the age of three when he began having epileptic seizures.

Unfortunately, there is no treatment for its condition strain.

George in April 2018

Over the course of a year, he went from saying 20 words and walking until he was unable to stand or talk.

Now, two years later, little George can not sit up without help, he must be hoisted from his bed to his wheelchair and fed through a tube in his belly.

But he can still laugh and he does it often, despite suffering from 20 to 30 convulsions a day.

Devastating, the condition is now taking away his sight.

George Young enjoys a helicopter ride

"I feel his sight is slipping, so noises and smells are becoming more important to him," said Claire.

"He's still a fan of Peppa Pig and when he hears music he gets excited and knows he's on.

"He'll be happy to watch an episode after the other, but I think it's more of the noise now than being able to fully engage, I can safely approach him and he will not react but as soon as he smells my, he knows that I am there.

"This is what I did to test what he can see, I wanted to see if he reacts to the smell and the noise without being able to see me, it's nice that we were able to do so many incredible things before his vision is disappeared, it means that he has already managed to see things as a whole.

"Losing your sight is the next step and it is so difficult: your hearing is still good, touch the wood, so we are making the most of this.

"We went on the Santa Steam train from Kidderminster Severn Valley train station to Arley and he loved the noise of the train and the manager's whistle, and was more excited by what we go to see Santa."

George on the Severn Valley Railway

George's Bucket and Spade List 2018

Claire and George are making a "list of buckets and spades" to try and try their hand at many beautiful experiences together, while they are able to do so.

Claire is indefatigable for George's condition, but modestly says that she is "only her mother".

George's bucket and swords list included:

• a helicopter ride

• a record in a fancy sports car

• a trip to Peppa Pig World

• a visit to Buckingham Palace

• A ride on the Severn Valley Railway

• the possibility of being a puppy for the day with the local scout troupe where he went for a motorboat ride.

• Indoor parachuting in a Superman flight suit

• a toboggan adventure in Austria, thanks to the Make a Wish foundation

George parachuting in his Superman costume

"We went toboggan last summer and he got so excited when he went down the mountain," he smiled.

"You sit in a small car like a dodgem and you can control how fast you go." She loved him so much, I asked him if he was fine and actually said "yes".

"He spoke to me, which was fantastic, was the first word he said in two years.

"What made it even better was the fact that the Make a Wish Foundation gave us a camera, so we managed to record it by saying this.

"It was very exciting."

George Young sled with his mother Claire in Austria

And, for his fifth birthday in July, they went to indoor skydiving!

"He wore a Superman dress and loved it.

"The center (in Milton Keynes) turned on the fans and was excited by the noise, I was a little worried if it would have been able to do it but the instructor kept it all the time and it is loved it.

"It was wonderful because it gave him the feeling of freedom in his body that he does not normally have: he's still a fool, just a kid at heart, loves anything fast or extreme and pushes the boundaries of his mother!"

George at the Severn Valley Railway

George's Bucket and Spade List 2019

The goal for 2019 is to build many more memories with George at home.

Claire is doing a lot of construction work to adapt their home to make it easier for George.

They also plan to enjoy some experiences in Scotland, where Claire is originally, and embark on a zip adventure in Wales.

"I heard you can get beach buggies for disabled children," he said.

"It would be great because George's wheelchair does not work on the sand.

"I'd like to take him to the beach and down to the water because he loved the beach and the sea."

Claire and George Young

Communication

It becomes increasingly difficult for George to communicate with his mother.

"He does not sign language, but there are some noises that he makes me know he means he wants something, as if he were hungry or not as comfortable as he is positioned," said Claire.

"He's on a very simple level but he can laugh and get excited and if he's ever troubled or anguished, I know there's something really wrong, because it's not a normal reaction for him.

"It's great for me, as I know until it's in tears or upset, that it's generally fine.

"We like to have a cuddle as part of our physiotherapy, I put it on my knees and move my legs while they tend to be straight and stiff, helping keep the muscles growing where they should be.

"I take the opportunity to make a cuddle and he enjoys interaction."

Watch the campaign George and Claire helped Dementia Strikes Children produce in 2018 when George was four years old:

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The times of meals

Claire can not have dinner with her son.

He had a tube inserted into his stomach last year to help him feed.

"He coped incredibly well with this, but it was really hard for him to be emotional because he loves his food so much," he sighed.

"He sees that the change in him has been difficult.

"I mix the foods I am cooking for myself and pass them through the tube rather than give them a milk-based diet.

"It means that I still have to cook for him in a certain way and that we are eating the same things, having a connection with him is incredible."

George in February 2019

Convulsions

George suffers 20 to 30 seizures every day.

"They manifest themselves in different ways rather than on the floor," said Claire.

"He will have a vacancy in his eyes, he will look like his days dreaming or he might seem cross-eyed.

"Sometimes his limbs become rigid and tremble, they take different forms.

"It's part of our everyday life, but if you stop and think about it, you take care of it all the time … well, it's really too much.

"He manages to fix himself and go out alone, but sometimes I have to give him some medicine."

George Young on a fast boat during his puppy day

School

George goes to Ridgeway School, a special needs school in Warwick that is fully adapted to his needs.

"He takes care of one by one and uses the hydrotherapy pool twice a week," he said.

"This is great because water gives him such freedom in his body that he does not normally, he can not move in there but at least he supports his body and he likes it.

"There's a sensory room and a soft play room, it was magnificent."

George Young at Peppa Pig World

He added: "His attacks took a lot from him and he was coming home exhausted, so I wondered if he would not be able to continue full-time.

"But the drug seems to work and it's giving it more energy and we've been revisiting its time to make sure it's not doing too much in a day.

"There will come a time when the school will be too much for him but, at the moment, he is going every day and he loves it."

George Young in a sports car

Clinical tests

There are clinical studies that seem to slow down the progress of some strains of childhood dementia.

Unfortunately, the Batten strain of George's disease is so rare that it is unlikely that there will be a clinical trial suitable for him.

However, Claire is confident that medical progress made will benefit other children with infantile dementia in the future.

"At the moment a clinical trial is under way at Great Ormond Street Hospital, although there is a question mark on funding," he explained.

"We hope that NICE will make the decision to continue funding, but it is always about money and how they want to spend it, we hope that when they see the results, which have been surprising, they will feel that it is an essential treatment.

"There were two siblings with infantile dementia subjected to the trial, the major began to present symptoms, but they did not progress further as a result of the trial and the younger sister did not begin to show any symptoms.

"So it seems that this treatment stopped the progression."

George Young at Buckingham Palace

He added: "Everyone is really confident that it can be applied to all variants of the Batten disease, which will be transferable across the entire spectrum.It is a light at the end of the tunnel.

"But, since George has such a rare variant, I think a process is very far for his particular type.

"If a process becomes available, we would do it because what should we lose?

"As a parent, you want to be able to do everything you can for your child. If there was even the slightest possibility that there was anything that would help, we would do anything."

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Inspiring families

Growing awareness

Claire and George worked on a campaign called Dementia Strikes Children Too last year, where George's posters and five other children with infantile dementia were exposed at Westminster tube station.

The huge posters stayed there for two weeks hoping to raise awareness among the public and politicians.

The campaign was a push for better clinical education of the disease, including prevalence research across the UK and a drive to put in place systems and tools to help early diagnosis.

"We had an overwhelming response to the campaign last year when we were spreading the news," said Claire.

"I am eager to raise awareness when I can.

"People associate dementia with the elderly, they do not think it affects children.

"It is incredibly important to get a diagnosis and start any treatment available as soon as possible to try and prevent damage."

Beautiful George

Doctors can not give Claire a prognosis because George's condition is so rare.

"We are simply led by George, taking every day as he comes and making sure that every moment counts," he said.

"He loves to laugh.

"We've had a lot of good memories last year, we're doing all the things we wanted to do when we grow up, but we will not have this opportunity, so we'll pack them all now."

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