Melissa was 23 when her second child, Lili, was born. She was such a good baby who hardly ever cried, so Melissa went back to work when she was just six weeks old.

“Everything seemed so easy at first,” she says. “It wasn’t until her daycare told us she wasn’t meeting her milestones when she was eight months old that we realised something might be wrong. I was in protection mode, though, so I refused to believe it at first.

“I took her to a paediatrician and he sent us to get some tests done. Lili had a CAT scan and the neurologist explained that things weren’t 100 percent right, but he didn’t know exactly what was wrong so he was going to send the results to a neurologists’ conference to get several opinions. He had to explain it to me three times because it just wouldn’t sink in.”

The diagnosis

Three months later, Melissa and her husband received the diagnosis: complete agenesis of the corpus callosum (ACC). This rare congenital disorder occurs when the corpus callosum (a band of white matter that connects the two hemispheres of the brain) doesn’t develop normally. Lili also had a range of other conditions that would affect her ability to communicate and move like other children.

“The doctor told us that most kids with ACC are in a wheelchair with a feeding tube and that was it,” says Melissa. “We weren’t given any information or told where to go for support. So I spent four days crying and searching online for any information I could find, but there wasn’t much at all. The internet wasn’t what it is today 10 years ago and it was such a rare condition – I couldn’t find one case in Australia.”

After months of physiotherapy appointments that seemed to be going nowhere, Melissa and her husband decided to go to England – where Melissa’s parents lived – to seek out better support services. They didn’t find the help they’d hoped for, but while they were there Melissa heard about a support group called the National Organization for Disorders of the Corpus Callosum (NODCC) that was based in America. They held a conference once a year, so Melissa signed up and they flew to South Carolina.

“The conference was a very eye-opening experience,” says Melissa. “Some kids were in wheelchairs with feeding tubes, but others could walk and talk. I’d gotten so boxed into what the professionals had told me Lili could achieve, but I quickly realised they didn’t really know and all kids are different. So I decided to start focusing on Lili’s abilities and help her strengthen them.”

But once they’d returned to Australia, Melissa was constantly frustrated by the roadblocks she kept hitting as she tried to find services such as occupational therapy and physiotherapy for Lili. “I was told to call Ageing, Disability and Home Care,” she says. “I had a two-year-old and I was calling aged care? I went through another grieving period because it didn’t feel like a normal parenting thing.”

Living with ACC

Meanwhile, she faced the judgement of strangers who didn’t understand why Lili sat in her pram at the park and wouldn’t talk to anyone. She also lost several friends who couldn’t cope with the situation. “I know it was nothing personal, but it was hard because I’d always been such a sociable person,” says Melissa. “Once, Lili was on life support because she’d had a bad epileptic seizure and we couldn’t find anyone to take our older daughter Isabella and our newborn Jett. I felt very alone.”

Despite all the obstacles she faced, Melissa was determined to obtain the same rights for Lili as her other children had. “I kept thinking, ‘She has so many abilities and no-one is seeing them,’” she says. “It was a pity party, she wasn’t being celebrated, and in so many moments I even felt like she was being dehumanised. That was the part that made me so upset.”

So she spent the next few years attending as many conferences as possible, and one in particular held by Family Advocacy really hit home. “They explained how lots of kids like Lili went to mainstream schools and were living normal lives,” she says. “I decided that’s what I wanted for Lili and that I would fight for it.”

And fight she did. Despite having countless professionals tell her that she was being selfish for trying to send Lili to mainstream school, Melissa stood her ground. “I found the school I wanted her to go to and I had meeting after meeting with them until they agreed to take her,” she says. “The first few months were so difficult – the staff was completely overwhelmed and none of the kids or parents would come near Lili. Everyone kept pressuring me to send her to a special school so I did split her time between special and mainstream school for a little while, but I didn’t feel special school was for her so I pulled her out.”

It wasn’t until Melissa started making short films demonstrating Lili’s abilities that things started to turn around at school. “I wanted to show the other kids all the cool things Lili could do, such as swimming,” she says. “Soon, they were talking to Lili and inviting her to their birthday parties.”

Domestic troubles

But while things were starting to look up for Lili, Melissa’s marriage was in trouble. “Almost 90 percent of marriages break down when you have a child with a disability and unfortunately I became the statistic,” she says. “Let’s just say it didn’t end well.”

“That was rock bottom for me. I also have pancreatitis despite the fact that I don’t drink, so I often land in intensive care. I’ve literally had to practice dying at the age of 34 to make sure that things will continue if I don’t make it.”

In spite of all the heartache she’s been through, Melissa is thankful for everything she has. “My biggest dream for Lili [who is now 11] has always been for her to be a valued member of the community,” she says. “I truly feel like she’s valued at her school now – everyone knows her and she’s quite popular.”

As for other parents of children like Lili, Melissa urges them to never give up. “I speak at conferences and tell parents not to listen to professionals who tell them what they want for their child isn’t going to work,” she says.

“I love this quote: ‘It might be the diagnosis, but it’s not the verdict.’ Never stop dreaming.”

You can follow Lili’s story on her Facebook page and help Melissa get the $30,000 wheelchair access conversion she urgently needs for her car by heading to her fundraising page