Rett syndrome: Kinglake Primary School’s Gypsy Lawrence inspires Yarra Valley charity football netball fundraiser

A Kinglake footy community has joined the fight against a rare disease that has left a brave little girl unable to walk or talk.

A country footy community has rallied around a Kinglake family in their fight against a rare disease that has left one of the children unable to walk or talk.

Gypsy Lawrence, 8, is the inspiration behind an annual Yarra Valley charity footy competition which has to date raised more than $120,000 to fund research into Rett syndrome — a neurological disorder affecting about 200 children around the country.

The firstborn child of plumber Lee Lawrence and partner Tahli Prohasky, Gypsy was diagnosed with Rett syndrome at the age of two.

Signs something wasn’t quite right with her facial expressions and hand usage appeared months earlier, but it took countless medical appointments and tests to finally land on the correct diagnosis.

Gypsy’s first year of life was ‘pretty much the same as any normal kid,’ her dad said. Picture: Supplied

After reading up on the incurable disease they’d never heard of, Lee and Tahli were shocked to learn about the effect it would have on their little girl.

They were told the average life expectancy was 25 to 30 years; Gypsy would never be able to speak; and her motor skills would decline to the point she may have to be fed through a tube.

But there was a sense of relief, Lee said, “to actually know what [they] were up against,” after a prolonged guessing game.

In the years since the diagnosis, the family has shown incredible strength and determination to change the outlook for Gypsy and other affected children.

Gypsy herself defied the odds by learning to walk and continuing to do so for a number of years, where most children with Rett syndrome never can.

She enrolled at a ‘mainstream’ school, which she attends four days a week; and became well-known around town as someone who is “always smiling” her dad said.

Though Gypsy has never learned to speak, her love of music is evident through her physical expressions, and her tastes have evolved in the same way all kids do as they grow up.

“As soon as we put the music on, she’s up and about,” Lee said.

“For a while there, she loved ‘Tones and I’ a heap.

“In early days, it was obviously The Wiggles and stuff like that, but now she’s even into a bit of Ed Sheeran.”

Gypsy, far right, with sister Ishana, mother Tahli Prohasky, brother Boston, and father Lee Lawrence. Picture: Supplied

The Kinglake and wider Yarra Valley community has been alongside Gypsy and her family throughout the journey, embracing their efforts to increase awareness of Rett syndrome and ultimately prevent it from claiming more young lives.

For Lee — a former coach and lifelong footy fanatic — a natural avenue was the Yarra Valley AFL league, which has for the past four years provided thousands of enthusiastic participants and spectators for his Valley Vicious Rett Syndrome Awareness Cup, held at Healesville at the start of each season.

“Once we’d sort of found out what it [Rett syndrome] was, my first thing was well, what can I do, and how can I sort of put my mind off what we’re going through and help other Rett sufferers,” Lee said of the event’s origins.

Gypsy’s Grade Prep photo at Kinglake Primary School. Picture: Supplied

As well as fundraising for the Rett Syndrome Association of Australia, the event has each year connected Gypsy and her parents with other families affected by the disorder.

Lee said giving these families a voice had been the most powerful motivation for him, and he was grateful for the footy community’s willingness to listen.

“The first year we did it, we had about 20 Rett families there, and what blew me away was, all these kids were in [wheel] chairs — Gypsy was the only one walking around,” Lee said.

“So I really thought to myself, I’m pretty lucky here, some of these kids have never actually walked.

“And that sort of just drove me a little bit more to continue doing what we’re doing.”

Gypsy was able to walk for a couple of years, but will likely need a wheelchair for the rest of her life. Picture: Supplied

This year’s cup, held in February, had 2500 people in the crowd and ex-AFL players Russell Robertson, Josh Fraser, Brodie Holland, Austin Jones and Lindsay Gilbee on the field.

Lee said the support made it well worth spending most of the year pulling everything together, at the same time as running his own business.

“What we’re doing is just trying to make everyone understand that these little kids — they really haven't had a chance at life,” he said.

“It’s right from the start they're just affected and they never bounce back.”

Gypsy at the Valley Vicious Cup with friend Lauren Gale. Picture: Supplied

Gypsy’s family is hopeful ongoing RSAA trials will eventually come up with a cure for Rett syndrome.

In the meantime, they are focused on getting through flu season and the next Covid wave without too much stress on Gypsy’s compromised immune system.

Beyond that, their future is uncertain.

“We just don’t know,” Lee said.

“Seizures and stuff like that can come back.

“Gypsy’s been very lucky with seizures that she hasn’t had too many but … they [Rett sufferers] can get crook so easily.”