At 19 months old, little Billy Casey is already exceeding expectations.

“He had a 50 percent chance of making it to his first birthday,” his mother says. “So he's doing well as far as Billy goes, you know. He's still got a lot of medical issues.”

Billy (William) is the son of Weston couple Hayley and Mathew Casey. He was diagnosed with semi-lobar holoprosencephaly (HPE) and microcephaly at just six days old.

HPE is a congenital condition that causes a developing baby’s brain to improperly separate into the right and left hemispheres. Microcephaly is a small head and is secondary to the HPE.

The HPE means Billy is also missing his corpus callosum - the bundle of nerve fibres between the hemispheres, which allows the sides to communicate with each other.

The Caseys were told Billy would not be able to communicate or walk, and in June he needed surgery to have a gastrostomy tube (or G-tube) fitted because he aspirated badly when feeding.

It was also revealed his sodium levels were dangerously high, which kept him in the intensive care unit for five days following the surgery, Hayley says.

“So the part of the brain, well, not the part - there's lots of parts affected - but one part is the hypothalamus, which is where the growth hormones are done.

“That's where the sleep issues come from, ‘cause he doesn't produce melatonin properly, and I don't know the technical reason behind it, but that's why he can't regulate his sodium himself . . . That is also linked into his thyroid issues as well, which he's now medicated for, which he wasn't before his ICU stay.”

Billy is the third of the couple’s four sons

Hamish (five) has just started school, and before Billy came along, Hayley and Mat suffered the loss of their second son Lewis who was born prematurely at 23 weeks and six days gestation and only lived a few days.

Their fourth son Ryan is a healthy seven-week-old, except for some niggly reflux, which means he also doesn’t give his mother much of a break during the day.

Hayley and Mat have a child each at night - Mat attends to Billy, while Hayley sees to Ryan.

One thing the Caseys have found makes a difference for Billy is a form of intensive therapy, at a place called Centre of Movement, on Australia’s Gold Coast.

The therapy has made such a difference for him, the family are left trying to foot the bill themselves to continue with it, after changes around funding for disabled people’s support, services and equipment were made unexpectedly in March.

It costs $8,100 for an intensive three-week block of three hours a day, five days a week, and then travel costs are on top of that - bringing the total costs close to $20,000.

“So that was individualised funding and we could use it for anything that gave us respite as a family.”

Now funding can only be used for “practical” things for Billy, such as sensory toys, in-home care, or classes for him (but not his parents).

“But nobody's going to take a disabled 18-month-old,” she says.

They can use the money for in-home care, and have somebody who helps for ten hours a week, but doesn’t want to work more than that - and the job is not an easy one.

“It requires someone that can kind of cope with the medical side of things, but also cope with him when he's just screaming and you can't settle him.”

And then it has to be somebody the couple trusts, Hayley says. 

“So, although it is nice to have that respite from him, it's not the solution . . . you can't use it for that as easily as the ministry seemed to make out you can, you know?”

Hayley’s life is busy, mostly with what she calls “William admin” - making appointments, following up on appointments, keeping on top of medications, doing at-home therapy, and travel to and from Dunedin or Christchurch, if he needs to be seen at a hospital.

She also spends a lot of time filling out forms to be reimbursed for costs.

“We can use our funding for sensory toys, which I'd swap in a heartbeat for therapy if I could . . . But when you buy that, then you've got a claim for it and you've gotta write an explanation about why he needs that. 

“And if you've got hospital appointments in Dunedin, obviously that takes a whole day, but then we do get a portion of our travel that we can claim back, but then you've gotta go through and do all that.”

She also has to manage the other two children’s needs as well as Billy's, and Billy’s are a lot, she says.

“When he's happy, he's a very, very happy boy, but he requires 100 percent of your attention, you know, he won't just sit and chill. There's no chill baby.”

The last time Billy received the therapy, he learnt the hand sign for ‘more’, Hayley says.

“I mean it's not much communication, but it's more than what we thought he'd do, and at only 18-19 months old, I'm pretty stoked with that.

“The significant progress that we see through this therapy is amazing because, you know, to not be able to communicate ever, but then after two blocks of therapy, we are learning communication.”

Billy is also learning to hold himself upright, and his parents hope he might one day gain independent mobility. He has also been feeding better orally since his last session.

“I mean, he's always going to be delayed, the therapy's not going to fix him by any means, but it's going to give him a better quality of life,” she says.

Billy learns to balance with the help of one of his therapists at the Centre of Movement in Australia. Photo: Supplied/Facebook

The therapy is physical, but through the physical movement of the body, new neural pathways in his brain are created and so Billy’s cognitive skills are also improving.

“It's been incredible”

The other benefit of the therapy, is it connects Hayley and Mat with other families facing the same struggles they are. 

“And it's really nice, you know, we’re battling the same systems and the same challenges that are very different to typical parenthood, so that side of things has been really, really good for me, ‘cause it can be very lonely.”

Ideally, Billy would have a session at the centre every three months, but the Caseys accept that’s probably not attainable, and they just want to do it as often as possible - especially while he’s young.

Hayley’s mother Karen Fraser says nobody realises quite what Mat and Hayley go through. 

“It really breaks my heart to see my daughter like this - and the stress, you know, I don't know how she does it. I really don't.”

Karen is determined to help raise the funds for Billy to continue his therapy, and has formed a committee with other supporters to bring together a Weston Gala Day on January 11, which will be run in a paddock on her and husband Don's Airedale Road farmlet.

The day will run from 10am to 4pm and include retail stalls, food and plenty of entertainment such as bouncy castles, laser tag and arts and crafts.

The Lions Club is coming with the chocolate wheel and candy floss, and Karen has just managed to lock in The Wonky Donkey author and performer Craig Smith.

Hayley’s 89-year-old grandfather is also making two leadlights to be auctioned off on the day.

The community has been “absolutely incredible”, Hayley says. 

“Which is really humbling, but also it's really sad that the community are footing the bill, you know, for something that should be funded.” 

Karen says the gala idea popped into her head, because raffles and sausage sizzles weren’t going to cut it.

“That’s all only two or three hundred bucks . . . we need big money,” she says.

“It's gonna be huge. It's gonna be very good. We are very, very excited.”

The plan is to make the gala an annual event, Karen says. 

“Billy's life expectancy is not huge, so we'll do it in honour of him every year, and then we can help other kids as well.”

People wanting to be part of the gala day - by either sponsoring or running a stall, are encouraged to get in touch via Billy’s Linktree. People can also follow Billy’s journey on Facebook.