When Adia Herry was just 18-months-old she had two strokes and lost all movement on the right side of her body and the fine motor skills on her left side.

At the time she had been unwell and was in hospital and she was flown to Melbourne where she stayed for seven weeks.

Adia, who was born with Down Syndrome, was diagnosed with Moyamoya. A rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain. The name moyamoya means puff of smoke in Japanese and describes the tangle of tiny vessels formed to compensate for the blockage.

Adia’s mum, Nicola Herry, said the only way to stop further strokes was with surgery and in late September Adia had her fourth brain operation.

“We did some research and they could do one type of surgery at the Royal Children’s in Melbourne but we found someone who specialised and they’re up in Sydney,” she said.

Mrs Herry, whom with her husband Rob has five children, said the latest surgery went well.

“Children tend to have clots, older sufferers tend to have a bleed,” she said. 

“They use a different artery on the outside and they basically go through the skull and attach it to the brain on the inside.

“We won’t know for six to 12 months if the surgery worked because you’ve got to wait to see if the blood flow actually establishes itself. 

“It’s a progressive condition. She’s had five strokes all together now.”

Mrs Herry said Adia, who is also a twin, had scans every six to 12 months to see how the disease was progressing.

“So her scan in September last year showed it was progressing in the back of the brain which is why we’ve had to have this next surgery,” she said. 

“It’s something that you’ve got to watch because things can change and it can stop working.

“It’s most commonly diagnosed in children who are five to 10-year-olds or adults about 40.

“She’s got a fast and progressive condition because she started having symptoms at 18-months-old.”

Mrs Herry said there were a lot unanswered questions about the disease.

“It’s a genetic thing but they don’t really know why and how it happened and it often occurs with other genetic conditions,” she said.

“It’s so rare that there’s not a lot of research and there’s even less research in children.

“Even with the surgery it’s not as if she doesn’t still have it.

“They don’t know why it has happened, they can’t stop it happening. 

“They can just treat the symptoms and try and prevent more happening because without surgery then it would be strokes which would lead to brain damage and death.”

Mrs Herry was originally from the UK and met her husband when he was travelling there in 1999.

The couple later married and settled in Mr Herry’s hometown of Mortlake.

In 2012 the fish and chip shop they owned in the small town burnt down.

Together the couple have 10-year-old son Cooper, an eight-year-old son Arlo, Adia and her twin sister Remy and their two-year-old daughter Milana.

“They’re typical siblings in someways,” Mrs Herry said. 

“They’ll get on each others’ nerves but at the same time they’re really aware that she needs a bit more help and sometimes there’s things she can’t do.

“So at the moment obviously just after surgery she’s not allowed to play on the trampoline, she’s not allowed to bang her head, so they’re good with that.

“When we’re away we’ll do a video call everyday so that they can see her and she can see them - I think everyone was really happy when we got home.”

Mrs Herry said although she was generally pretty relaxed, the days Adia had surgery were always difficult.

“It’s probably the worst because of the wait once she goes in,” she said.

“It never gets any easier to take them in and have them put to sleep and then have to walk away and just wait.

“It’s stressful. There’s post traumatic stress and living with the unknown.

“The constant state of is she well, is she healthy?”

Mrs Herry said she and her husband had received ongoing support from family and friends in Mortlake and through an online Down Syndrome support group.

“We’ve got a lot of friends and family in Mortlake who are very supportive but it is all the time,” she said. 

“It’s very constant and ongoing condition. You do live with it and learn to adapt to things.” 

The next step to see how Adia is progressing will mean a teleconference from home with the surgeons in Sydney.

“Then we’ll see how that surgery has gone and if she needs more surgery and if it’s working or not working,” she said.

“We’re sort of now at the wait and see stage.

“See how it goes and carry on with life in the meantime.”

For now Adia will be preparing to join her older siblings at St Colman’s Primary in Mortlake in the new year.

“Our other kids go there and the school has wanted her to attend school with her other brothers and sisters,” Mrs Herry said.

“They’re doing everything they can to make it accessible and safe and possible for her to go there rather than have to go to the special school and travel.

“It’s nice for her to go off with her brothers and sisters and be close at hand for me if she does get sick.”

Mrs Herry said she was often amazed at her daughter’s attitude which was simply to get on with life.

“She really handles it so much better than I would,” she said. “It’s good because she’s that bit older and she can communicate with us and tell us if something hurts.

“She uses a mixture of speech and sign language mainly because when she had a stroke it affected her fine motor skills so some signs are hard and it’s also affected her throat like her speech and her swallowing.

“She understands a lot more than people give her credit for, she really does understand a lot now which is really good.

“She can be really stubborn and determined but I think it helps her.

“If I’d just had brain surgery I’d be in bed taking the strongest pain killers and complaining, whereas she hasn’t had any pain killers for two days. She just gets on with it.” 

Down Syndrome Awareness Month runs throughout October.