ANGELMAN syndrome sufferer Finn Blackman (3) is his father Kane’s special man.
The Subiaco toddler was diagnosed with the genetic condition, which will inhibit his motor skills co-ordination for life, a year ago.
“Being told that is still affecting us, both my wife and I, very hard, because some of our dreams were shattered, and you now know you can’t hear your son say the words ‘I love you’,” Mr Blackman said.
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READ NOWDespite not previously being a runner, he has been training to tackle the Melbourne Marathon and raise $20,000 for research into the syndrome on October 15.
About one in 10,000 to 15,000 children can have the syndrome and there are only about three diagnosed with Finn’s specific type of the condition in Australia.
It is caused by one missing gene on the female side of the fifteenth chromosome, affecting speech muscle co-ordination, movement and development.
Finn is at the lower end of the syndrome’s spectrum.
Unlike talkative toddlers of his age, he has a vocabulary of 20-30 words and needs some help walking on uneven surfaces.
“He can feed himself, but when it came to opening jars it has been with some difficulty, needing some help,” Mr Blackman said.
He said the syndrome was often discovered when parents noticed their child’s speech was not developing correctly.
“Finn has every potential to live independently and work,” Mr Blackman said.
Training for the marathon has enabled Mr Blackman to concentrate on the positive and how research into his son’s syndrome could help those with other genetic conditions.
“That’s the exciting thing for us, opening up the potential for this research,” he said.
Sponsor at https://angelmancommunityfundraising.everydayhero.com/au/fast-cure-angelman-syndrome.
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