Taking his first brave steps was just one of the achievements in a big year for Ted Johnston.
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The three-year-old from the Gilgandra district who was diagnosed with Angelman syndrome benefited from a period of intensive therapy in Sydney - and became a big brother, reports mum Sarah Johnston.
His loving parents are looking to the future with hope, and are buoyed by clinical trials seeking a breakthrough for people with the neurogenetic disorder that causes severe intellectual and physical disability.
February is Rare Disease Month, and Mrs Johnston says their message is "better days are coming".
The family faced a long and emotional search for answers before Ted was diagnosed with the condition that affects only one in 15,000 people.
After such a hard road, in 2021 the family had cause for celebration.
Ted and big sister Grace welcomed baby brother Roy, Mrs Johnston said.
Ted also had six weeks of intensive therapy at NAPA Centre (Neurological and Physical Abilitation Centre) in Sydney.
Mrs Johnston said he achieved so much including effectively communicating his "first word" using a button to ask for "more".
"Because Ted is completely non-verbal and his motor skills and coordination are not effective enough to do sign language, this is for now how we are working on communication," she said.
Ted received his walking frame and can now step in it.
"He is also working on walking with assistance, like you would with a baby," Mrs Johnston said.
National Disability Insurance Scheme (NDIS) wins include Ted receiving a high-lo chair, being approved for a specialised bed to ensure he is safe and sound during the night and being able to spend some time with his support worker, Mel, who has been a tremendous help and pivotal in the success of the year, Mrs Johnston says.
The mum and carer reports in the past year there's also been "some incredible advances in medical research".
There are two therapeutics set to undergo clinical trial in Australia, one of which offers "the chance to turn the paternal silenced UBE3A gene back on, potentially recovering a lot of function and possibly cure the condition", Mrs Johnston says.
Two other therapies have begun trials overseas, and one has so far delivered extremely exciting interim results, she says.
It is International Angelman Day on Tuesday February 15, and Mrs Johnston is working to increase awareness.
"This Rare Disease Month I'd like to invite everyone to wear blue on the 15th with our little poem:
'Cupid has wings
'Angels do too
'On the 14th we wear red
'On the 15th we wear blue.'
"Our message for Rare Disease Month is better days are coming.
"There is a hashtag #BetterDaysAreComing and it highlights the promise of clinical trials that are currently happening overseas and two coming to Australia early this year.
"As well as this there are multiple other therapeutics that are heading towards the clinic.
"The time has never been more hopeful for our Angelman community."