![\"\"](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/Cody-4fba.png\")
\n\t\tCody was diagnosed with Sanfilippo syndrome, at only three-years-old (Picture: Jam Press\/@codys_fight)<\/p>\n
\t\t
\n\t\tCody was diagnosed with Sanfilippo syndrome, at only three-years-old (Picture: Jam Press\/@codys_fight)<\/p>\n
\u2018I\u2019m watching my child fade away every single day, and it\u2019s enough to break a person,\u2019 says Georgia Nonas, 29.<\/p>\n
Georgia\u2019s son, Cody, who she describes as a \u2018loving little boy\u2019 with \u2018the most contagious smile\u2019, was just three years old when he was diagnosed with Sanfilippo syndrome, often dubbed as childhood dementia.<\/p>\n
The heartbreaking condition can cause developmental regression and a subsequent loss of skills, mimicking the disease found in older people.<\/p>\n
Typically, children who have the condition are only expected to live until their late teens. <\/p>\n
\u2018Children with Sanfilippo lose every skill they\u2019ve learned,\u2019 said Georgia. \u2018Sadly, we are seeing this happen now.\u2019<\/p>\n
Cody first started experiencing health issues when he was just one. <\/p>\n
\t\t![\"Story](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/SEI_297810700-b015.jpg\")
\n\t\tGeorgia wants to raise awareness of her son\u2019s condition (Picture: Jam Press\/@codys_fight)<\/p>\n
\u2018We noticed his hearing wasn\u2019t very good, and he was having recurring ear infections,\u2019 says Georgia.<\/p>\n
\u2018This is a common tell-tale sign of Sanfilippo syndrome, but at the time, we didn\u2019t even know what that was.\u2019<\/p>\n
Then, Cody started to show regression in his development.<\/p>\n
\u2018He said \u201cmamma\u201d and \u201cbaba\u201d, and then never spoke again,\u2019 says Georgia.<\/p>\n
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.<\/p>\n
Georgia, now a full-time carer to her son, describes the diagnosis as \u2018the worst day of my life\u2019, adding that she \u2018felt numb and was very much in denial.\u2019<\/p>\n
\t\t\t\tSymptoms of Sanfilippo syndrome \t\t\t<\/p>\n
Researchers estimate that 1 person per every 50,000 to 250,000 people have Sanfilippo syndrome, which globally is estimated to be 7,000-19,000 people living with the disease.<\/p>\n
Early signs and symptoms of the syndrom in newborns and infants may include:<\/p>\n
Coarse facial features.
\nProminent, broad eyebrows.
\nExcessive body hair (hirsutism) that doesn\u2019t go away.
\nA head that\u2019s larger than typical (macrocephaly).
\nSleep disturbances.
\nRespiratory problems, like ear and\/or\u00a0nasal congestion\u00a0and breathing difficulties.
\nColic-like episodes.
\nFrequent\u00a0diarrhea.<\/p>\n
These symptoms typically appear between the ages of 1 and 4.<\/p>\n
You can find out more here<\/a>.<\/p>\n \u2018Myself, Cody\u2019s dad, Callin, and my mum sat in the room when they confirmed it, and it was silent,\u2019 says Georgia.<\/p>\n \u2018I didn\u2019t process it for a long time.<\/p>\n I remember sitting at a family BBQ a few days later and I couldn\u2019t hold a conversation. I was completely zoned out.\u2019<\/p>\n \u2018It was like in the movies when all you hear is ringing in your ears and you can\u2019t hear the noise around you.<\/p>\n \u2018The doctors told me to take him home and give him all my love.<\/p>\n \u2018When 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.<\/p>\n \u2018Every morning I woke up, it hit me all over again.\u2019<\/p>\n \t\t Cody was diagnosed with type A, considered to be the most aggressive form of Sanfilippo.<\/p>\n Georgia said: \u2018I can\u2019t remember exactly how it was explained to me at the time \u2014 it\u2019s hard to concentrate when you receive news like that \u2014 but over time and through countless appointments, I picked up what the diagnosis would mean.<\/p>\n \u2018Cody\u2019s body is missing an enzyme, which means his body has a lot of waste it can\u2019t process, and this builds up on his spinal cord and brain.<\/p>\n \u2018It\u2019s progressive \u2014 over time, the damage caused by the waste takes away his ability to communicate, eat, and walk, and it causes brain damage.\u2019<\/p>\n 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.<\/p>\n \t\t Georgia says: \u2018Daily life can be hard for Cody \u2014 his sleep, communication, mobility, and even eating is affected.<\/p>\n \u2018As a parent, it\u2019s incredibly difficult to see your child in pain.<\/p>\n \u2018Anticipatory grief is a big part of being a parent to a child with Sanfilippo \u2013 you start grieving your child the day you get that diagnosis.\u2019<\/p>\n \u2018It\u2019s a gut punch at random times in the day.\u2019<\/p>\n \t\t\t\tAnticipatory grief\t\t\t<\/p>\n Anticipatory grief is the grief, loss and anxiety<\/a> people feel, before the impending loss. <\/p>\n With 918 child deaths (aged 1-15) in 2024, the number of parents losing their children each year is unimaginable. Child Bereavement UK say parents who find out their child is not expected to live often experience feelings such as shock and distress, to numbness and denial. <\/p>\n Fear, anger and confusion are also all normal and natural feelings and responses.<\/p>\n You can find confidential support here<\/a>. You can also call their helpline at\u00a00800 02 888 40<\/a> pr email\u00a0helpline@childbereavementuk.org<\/a><\/p>\n Since Cody\u2019s diagnosis, Georgia has been vocal on social media<\/a>, sharing her son\u2019s story, to help raise awareness.<\/p>\n \u2018I feel it\u2019s important to share Cody\u2019s story because, before his diagnosis, we had never heard of it.<\/p>\n \u2018But when I went looking for a community online, I saw children who looked just like Cody \u2014 I couldn\u2019t believe it.<\/p>\n \u2018I feel like if someone sees Cody\u2019s story and thinks, \u201cOh, my child has those features\u201d, it can lead to an earlier diagnosis \u2014 which is so important so we can get them support and therapies to make their lives more manageable.\u2019<\/p>\n \t\t Alongside her advocacy work online, Georgia is taking everyday as it comes with her \u2018most loving little boy\u2019.<\/p>\n She added: \u2018Everyone who meets him is just amazed by him, and I couldn\u2019t be prouder to be his mama.<\/p>\n \u2018When Cody was diagnosed we lived in a world with very little hope, however in the coming years, we\u2019re very focused on time.\u2019<\/p>\n While there is no treatment available in the UK, the family are waiting on the Food and Drug Administration (FDA) in the USA<\/a>, to approve a gene therapy which, if Cody were to receive, could give him more time.<\/p>\n \u2018It isn\u2019t a \u201ccure\u201d in the traditional sense, but it is a way to slow down the clock,\u2019 says Georgia.<\/p>\n \t\t \u2018Our biggest wish is to get him to that treatment so we can hold onto the boy he is today for as long as possible \u2014 to keep his smile, his laugh, and his spark from being taken away too soon.<\/p>\n \u2018I don\u2019t want birthdays to be a sad day, a reminder of the clock ticking.<\/p>\n \u2018Hope is all we can hang onto at the moment.<\/p>\n \u2018Cody is the light of my life I want to travel and explore the world with him\u2019<\/p>\n \u2018We have a trip to Disneyland Paris booked this July<\/p>\n \u2018I just want to make as many memories as possible.\u2019<\/p>\n Do you have a story to share?<\/p>\n Get in touch by emailing MetroLifestyleTeam@Metro.co.uk<\/a>.<\/p>\n Arrow Arrow Arrow![\"Story](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/SEI_297810721-e90a-e1779100508646.jpg\")
\n\t\tCody takes daily painkillers due to muscular and joint pain (Picture: Jam Press\/@codys_fight)<\/p>\n![\"Story](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/SEI_297810726-a89c.jpg\")
\n\t\tGeorgia is raising awareness on social media (Picture: Jam Press\/@codys_fight)<\/p>\n![\"Story](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/SEI_297810832-ab3f.jpg\")
\n\t\tThere is currently no known cure (Picture: Jam Press\/@codys_fight)<\/p>\n![\"Story](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/SEI_297810695-3b91.jpg\")
\n\t\tGeorgia is making the most of everyday with her son (Picture: Jam Press\/@codys_fight)<\/p>\n
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