Words of hope at camp

Girrawheen resident Aasta Kelly with her children, from left, Piper and Sawyer Allen.
Girrawheen resident Aasta Kelly with her children, from left, Piper and Sawyer Allen.

The Girrawheen boy has a rare genetic condition called 15Q overgrowth syndrome, which means physically he grows faster than other children and he cannot talk.

His mother Aasta Kelly said the syndrome that resulted from a duplicated arm on the 15th chromosome was rare, with little information available about how it will affect him growing up.

‘We are expecting Sawyer to be very tall,’ she said.

‘It’s a bit of ‘hit and miss’ as to what the future holds.’

Miss Kelly said the syndrome mostly affected his growth and his speech, although he also technically had fluid on his brain and his limbs were a bit ‘floppy’.

‘He can’t talk; his receptive language is brilliant but his expressive language is non-existent verbally,’ she said.

‘He is now in the school system; he needs to be able to get his point across.

‘He is so social and friendly and bright (but) he can’t get out what’s inside.’

Sawyer will join 15 other children who have communication difficulties at the 2014 Variety Motor Mouth Camp in Point Walter tomorrow.

The five-day camp combines fun with intensive therapy and training for those children, who rely on subtle signs such as blinks, nods or noises and communication aids to express themselves, as well as their parents, siblings and carers.

Having known Sawyer for more than two years, Therapy Focus speech pathologist Jessie Diamond helped him get a ‘talker’ or communication device through the Independent Living Centre and get into the camp.

‘The whole family will be able to meet other families that use a communication device (at the camp),’ she said.

Miss Diamond has been teaching Miss Kelly how to use Australian Sign Language (Auslan) so he can get therapy all day, rather than in one-hour sessions. Miss Kelly said one of the hardest aspects to accept was that Sawyer would never be able to say his name or his sister’s.

‘As a family, we are big talkers. There are 10 cousins; for him to be able to talk to them on the device will be amazing,’ she said.

Miss Kelly said Sawyer had lots of medical issues as a baby which led to his early diagnosis and he has had therapy ever since.

She said he was 10cm longer than he should have been at four months old when they started testing at Princess Margaret Hospital and found his bone age was higher than his real age.

An ultrasound found he had one enlarged kidney rather than two, and a geneticist suggested he might have Sotos syndrome, but more tests revealed he had the rarer condition, 15Q overgrowth syndrome.

Ms Kelly said Sawyer was doing much better than they expected, mostly because he had been in therapy since he was six months old.