The baby boy who can’t cry due to a rare brain disorder

The Daily Telegraph Story: The baby boy who can’t cry due to a rare brain disorder

MOST new parents dread screaming babies and sleepless nights, but for Yasmin and Michael Burley, that is what dreams are made of.

Their five-week-old baby boy Tate will never cry, never be able to suck on a bottle, and will be lucky to live out his childhood — and even if he does, his brain will never develop past that of a three-month-old.

When Tate was born at 35 weeks he weighed just 1.7kg and he wasn’t breathing — or crying.

Soon after, he was diagnosed with an incredibly rare brain disorder Miller-Dieker Lissencephaly syndrome, which is a birth defect of the brain that affects most of his major systems.

It means his brain is smooth like an egg, instead of covered in cauliflower-like rivets like a normal brain, which means no senses are going in or out, leaving his little body unable to function as it should.

“The unknown is really hard because we just don’t know what’s going to happen — everything is he may, he may, and everything is waiting,” an emotional Ms Burley, from Kellyville Ridge in Sydney’s north west, said.

“He has no muscle tone and doesn’t have a lifespan past childhood. I’ve been in touch with a lot of families in the US and no one has gotten past the age of five.

“We just want him to cry, we want the sleepless nights and all the things a parent goes through.”

Ms Burley, who also has older sons Zane, 13, and Kye, 7, said it was nice to finally be home as a family instead of in and out of hospital high-dependency wards.

“Tate is a humble reminder of the truly important things in life,” she said.

“It’s tough, especially for the boys. They don’t understand it.

“Their baby brother is sick and the question around ‘will he die?’ was hard to deal with.

“For my seven-year-old to ask me why God wasn’t looking after him was heartbreaking and he keeps asking why mum is always crying.

“We just wanted to be a family. We are not thinking too far ahead because no one really knows what the journey for Tate is.”

The Burley family, who are raising money for the Brain and Mind Research Institute (BMRI) via crowd funding website MyCause, said they hoped future research into the syndrome would help other families devastated by the disorder.

The condition is so rare in Australia that the BMRI did not have an expert available to comment on the condition but said it was a condition characterised by abnormal brain development known as lissencephaly.

“Normally the exterior of the brain is multi-layered with folds and grooves — people with lissencephaly have an abnormally smooth brain with fewer folds and grooves,” the institute’s information reads.

“These brain malformations cause severe intellectual disability, developmental delay, seizures, abnormal muscle stiffness or spasticity, weak muscle tone and feeding difficulties.

“Seizures usually begin before six months of age, and some occur from birth.”

Rare Disorder:

Miller-Dieker syndrome is a rare disorder, although its prevalence is unknown.

• It is caused by a deletion of genetic material near the end of the short arm of chromosome 17.
• In addition to lissencephaly, people with Miller-Dieker syndrome tend to have distinctive facial features that include a prominent forehead, a sunken appearance in the middle of the face and a small, upturned nose.
• Some individuals with this condition also grow more slowly than other children.
• People with Miller-Dieker syndrome may also have life-threatening breathing problems. Most individuals with this condition do not survive beyond childhood.

The Daily Mail Story: 'We just want him to cry': Parents of baby suffering from rare brain disorder which robs him of his senses tell of their daily heartache as they launch fundraising campaign

• Six-week old Tate Burley was born with Miller Dieker Lissencephaly Syndrome, a rare defect of the brain which means he can't cry
• Tate's family hope to raise $100,000 to pay for his care and brain research
• There is no cure for the condition and babies rarely live out their childhood

New parents Yasmin and Michael Burley say all they want is a screaming child and long, sleepless nights. 

Instead, their six-week old baby, Tate, is quietly fighting for his life at Sydney's Westmead Children's Hospital.

Tate was born at 35 weeks with an extremely rare brain disorder, Miller Dieker Lissencephaly Syndrome, which means he will never cry or feed properly, and will probably not live past the age of five.  

'We just want him to cry,' Ms Burley told the Sunday Telegraph.

The Miller Dieker Lissencephaly Syndrome affects most of Tate's major neural systems and his parents are told his brain will not develop past the three month stage.

Tate's brain is abnormally smooth, without the grooves of a normal brain which receive senses. 

'I had to come to terms with Tate possibly being blind, deaf and having seizures,' wrote his mother to a Facebook page marking her son's journey. 'The word seizure makes me gasp. It is a fact and it will happen.'

A milestone for the family was when Tate managed to suck 6-10mls out of a bottle by himself during one feed. Another was when they heard him 'squeak'.

'Tate has no ability to cry however we also witnessed a sound today when he got restless .. Not a cry or scream but definitely a squeak!,' Ms Burley posted. 

But after just four days at home, Tate developed a cold and his parents rushed him back to emergency. His mother thought he was dieing. 

'Granny & I watched Tate lie lifeless in the emergency ward on the table gasping for air, dropping saturations & an excessively weak heart rate, white with blue lips, eyes rolled in his head, body flopped,' she said. 

Little Tate is now recovering with mum in hospital. She calls him her 'silent fire.' 

'Today my lesson as a mum is to use the fire inside me to deal with the things I cannot change for my son and except reality as it challenges me,' Ms Burley wrote on Saturday. 

'No one can understand how a family with a terminally ill child is feeling or the choices they make ...stand up, be an advocate for your child, don't feel pressure because people are more educated than you because I learnt today that I'm educated in what a palliative care patient is.'

The Burleys say it is especially hard to explain to their older sons, Zane and Kye, what is happening to their baby brother. But they hope to be home as a family again soon.

Friends and family have launched a MyCause fundraising campaign to help pay for Tate's care and more research into the condition. They hope to raise $100,000.

'Research is majorly lacking in Australia,' Michael Burley told Daily Mail Australia. 'The more awareness the better for other families.' 
The campaign has so far raised over $11,000.

'With this current money we can provide Tate with a respiratory sleep machine, correct bedding and feeding apparatus at home for the next few months without having to worry,' says Ms Burley. 

For now, the family are fighting with Tate and trying not to think too far ahead. The hardest thing, they say, is 'the not knowing.'

See the campaign.