Every day a brave battle for Ethan

ETHAN Neyland’s bedroom in Buronga is a typical little boy’s room – filled with Collingwood Football Club paraphernalia, cuddly sloth toys and pictures of cars adorning the walls.

We really can’t plan ahead for anything, we literally take things hour by hour as they come – Aleesha Neyland, pictured with her son Ethan, 13

We really can’t plan ahead for anything, we literally take things hour by hour as they come – Aleesha Neyland, pictured with her son Ethan, 13

It’s not until you see the respiratory machines, tubes and specialised hospital bed that you realise Ethan is not like other boys his age.

In 2005, at just 11 months old, Ethan was diagnosed with what was known at the time as Duplication band Q28 on the X Chromosome – an illness so incredibly rare, Ethan’s mother Aleesha was told by doctors that her son was the first known case worldwide.

The disease was re-named in 2012, and is now known as MECP2 duplication syndrome, a genetic condition that occurs almost exclusively in males.

MECP2 is characterised by moderate to severe intellectual disability.

For more of this story, purchase your copy of Wednesday's Sunraysia Daily 14-3-2018. To subscribe to our Digital Edition Click here 

Smartphone
Tablet - Narrow
Tablet - Wide
Desktop