Ahead of Lissencephaly Awareness Day on September 8, we’re sharing Perth girl Gabriella Young’s journey with this little-known and incurable condition.

Lissencephaly is a rare condition that impacts about 1 out of every 100,000 babies.

It can be caused by both genetic and non-genetic factors and causes the brain to develop without its normal bumps and folds. Because of this, it’s often called ‘smooth brain’.

Lissencephaly typically causes developmental delays and cognitive impairment.

There’s no cure. Treating specific symptoms – of which there can be many – is the only option.

For Gabriella, it means she experiences seizures and struggles to safely swallow and eat, so is permanently fed through a tube.

This always smiley 9-year-old also has Weaver Syndrome, a genetic syndrome that causes bone overgrowth and is so rare only about 50 people in the world have been identified as having it.

“She also has hearing and vision impairment, chronic lung disease, bilateral kidney duplex, dystonia, gut motility disorder, sleep wake cycle impairment and complex pain,” explains Toni, Gabriella’s mum.

Complex Care Everyday

Gabriella’s 24-hour care is incredibly complex; she sees more than a dozen specialists at Perth Children’s Hospital (PCH).

She is regularly admitted to PCH and recently has been having more regular unresponsive episodes.

“The journey so far has been a long roller coaster, we wouldn’t have been able to do it alone…especially as Gabriella’s gotten older and her care needs have changed,” says Toni.

Gabriella’s complex care needs mean carer burnout for Toni and her husband, Aaron, is a constant issue.

Aaron works long hours and does shift work, while Toni works at night where possible to help support the family.

Help from Hannah’s House

As Gabriella cannot be looked after by just anyone, and with family a distance away, Toni and Aaron lean on Hannah’s House to provide specially trained support workers.

“It’s made a difference that we have carers that help care for Gabriella so we can go to work and have our own free time,” shares Toni.

Gabriella receives some NDIS funding, but her complex needs come with many expenses and demands.

As well as providing a regular stream of support workers, Hannah’s House helped source external funding for some critical equipment Gabriella needed when her daughter’s medical issues saw Toni unable to work for a period.

A grant program overseen by the not-for-profit organisation also paved the way for the Perth family to go on a Disney Cruise last year – a much-needed break after multiple hospital stays.

The Power of Play

Gabriella and Toni are also regulars at Hannah’s House’s inclusive Playtime Program and Family Events.

Toni says the Playtime Program has made a big difference to their lives.

“We can attend each week and be around other kids similar to Gabriella and it’s also for my sanity of being around other adults; it’s our once a week that we aim to get out of the house,” she explains.

Spreading Awareness

Toni has been sharing Gabriella’s journey online since 2020 and says it’s been important for her to do so.

“It originally started as a way to cope with her diagnosis and having an outlet [for] kinda getting it off your chest. It is also a way to update family,” she says.

“It’s now turned into some awareness on her conditions.” 

To follow the Young family’s journey, head to Instagram