My little boy has childhood dementia — I’m watching him fade away

Cody was diagnosed with Sanfilippo syndrome, at only three-years-old (Picture: Jam Press/@codys_fight)

‘I’m watching my child fade away every single day, and it’s enough to break a person,’ says Georgia Nonas, 29.

Georgia’s son, Cody, who she describes as a ‘loving little boy’ with ‘the most contagious smile’, was just three years old when he was diagnosed with Sanfilippo syndrome, often dubbed as childhood dementia.

The heartbreaking condition can cause developmental regression and a subsequent loss of skills, mimicking the disease found in older people.

Typically, children who have the condition are only expected to live until their late teens.

‘Children with Sanfilippo lose every skill they’ve learned,’ said Georgia. ‘Sadly, we are seeing this happen now.’

Cody first started experiencing health issues when he was just one.

Georgia wants to raise awareness of her son’s condition (Picture: Jam Press/@codys_fight)

‘We noticed his hearing wasn’t very good, and he was having recurring ear infections,’ says Georgia.

‘This is a common tell-tale sign of Sanfilippo syndrome, but at the time, we didn’t even know what that was.’

Then, Cody started to show regression in his development.

‘He said “mamma” and “baba”, and then never spoke again,’ says Georgia.

The little boy was diagnosed with autism in 2020, aged two, before a diagnosis of Sanfilippo followed a year later. The condition can also be characterised by certain facial features, such as heavy eyebrows, full lips, and excessive hair growth.

Georgia, now a full-time carer to her son, describes the diagnosis as ‘the worst day of my life’, adding that she ‘felt numb and was very much in denial.’

‘Myself, Cody’s dad, Callin, and my mum sat in the room when they confirmed it, and it was silent,’ says Georgia.

‘I didn’t process it for a long time.

I remember sitting at a family BBQ a few days later and I couldn’t hold a conversation. I was completely zoned out.’

‘It was like in the movies when all you hear is ringing in your ears and you can’t hear the noise around you.

‘The doctors told me to take him home and give him all my love.

‘When it started to hit me, I would act fine all day, and then as soon as I was alone, I would cry until I fell asleep.

‘Every morning I woke up, it hit me all over again.’

Cody takes daily painkillers due to muscular and joint pain (Picture: Jam Press/@codys_fight)

Cody was diagnosed with type A, considered to be the most aggressive form of Sanfilippo.

Georgia said: ‘I can’t remember exactly how it was explained to me at the time — it’s hard to concentrate when you receive news like that — but over time and through countless appointments, I picked up what the diagnosis would mean.

‘Cody’s body is missing an enzyme, which means his body has a lot of waste it can’t process, and this builds up on his spinal cord and brain.

‘It’s progressive — over time, the damage caused by the waste takes away his ability to communicate, eat, and walk, and it causes brain damage.’

Cody also has epilepsy, another common symptom, and has to take daily painkillers due to the muscular and joint pain caused by the syndrome. He also has to take a sleeping aid.

Georgia is raising awareness on social media (Picture: Jam Press/@codys_fight)

Georgia says: ‘Daily life can be hard for Cody — his sleep, communication, mobility, and even eating is affected.

‘As a parent, it’s incredibly difficult to see your child in pain.

‘Anticipatory grief is a big part of being a parent to a child with Sanfilippo – you start grieving your child the day you get that diagnosis.’

‘It’s a gut punch at random times in the day.’

Since Cody’s diagnosis, Georgia has been vocal on social media, sharing her son’s story, to help raise awareness.

‘I feel it’s important to share Cody’s story because, before his diagnosis, we had never heard of it.

‘But when I went looking for a community online, I saw children who looked just like Cody — I couldn’t believe it.

‘I feel like if someone sees Cody’s story and thinks, “Oh, my child has those features”, it can lead to an earlier diagnosis — which is so important so we can get them support and therapies to make their lives more manageable.’

There is currently no known cure (Picture: Jam Press/@codys_fight)

Alongside her advocacy work online, Georgia is taking everyday as it comes with her ‘most loving little boy’.

She added: ‘Everyone who meets him is just amazed by him, and I couldn’t be prouder to be his mama.

‘When Cody was diagnosed we lived in a world with very little hope, however in the coming years, we’re very focused on time.’

While there is no treatment available in the UK, the family are waiting on the Food and Drug Administration (FDA) in the USA, to approve a gene therapy which, if Cody were to receive, could give him more time.

‘It isn’t a “cure” in the traditional sense, but it is a way to slow down the clock,’ says Georgia.

Georgia is making the most of everyday with her son (Picture: Jam Press/@codys_fight)

‘Our biggest wish is to get him to that treatment so we can hold onto the boy he is today for as long as possible — to keep his smile, his laugh, and his spark from being taken away too soon.

‘I don’t want birthdays to be a sad day, a reminder of the clock ticking.

‘Hope is all we can hang onto at the moment.

‘Cody is the light of my life I want to travel and explore the world with him’

‘We have a trip to Disneyland Paris booked this July

‘I just want to make as many memories as possible.’

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