Although his body is slowly failing him, nothing can wipe the smile from Adam Alnasser.
Over time, Adam’s vision, speech and mental skills will deteriorate and he will eventually lose touch with his surroundings.
The three-year-old isn’t expected to live past the age of 10. His condition is very rare and affects only about one in 200,000 people.
Adam’s mother, Zaineb Elwanni, said she first noticed something was wrong with Adam when he was nine months old.
Following 16 months of exhaustive medical tests, Adam was last year diagnosed with a rare terminal disease called neuroaxonal dystrophy, where he experiences the slow regression of his motor and intellectual skills.
“We had already read about the condition, but we denied it and thought it couldn’t be that,” Mrs Elwanni said.
Over the past year, Adam has lost the ability to walk. He requires regular botox injections to relax his leg muscles to help support his body.
“We’ve been told there’s no cure and the only thing we can do is treat his symptoms as they appear,” Mrs Elwanni said.
“He can’t speak or sit upright without support, but he’s doing physio and we’re working on keeping up his motor skills for as long as we can.”
Adam’s childcare centre, Goodstart Early Learning, in Hoppers Crossing, has helped his family raise $4000 to buy a mobility walker.
Centre director Sarah Sattler said the walker had given Adam a new zest for life.
“It’s given him more independence and it’s wonderful to see him … playing with his friends”
Mrs Elwanni said she had been overwhelmed by the generosity of the centre, businesses and the community and was determined to make Adam’s life as comfortable as possible.
“We want to keep him smiling.”
Cameron Tait
