Campdraft for a Cure to SynGAP1

Clare Adcock
By Clare Adcock
Updated April 5 2022 - 8:46pm, first published April 2 2022 - 5:00am
Gracie Webster in her first campdraft a few weeks ago. Photo: Ropes n Spurs Photography

They say if you want something to happen, you may as well do it yourself, and that's exactly what this Wandoan family are doing.

The Webster family are running the Wandoan Campdraft for a Cure next month and raising money for the SynGAP research fund.



Sarah and Cameron Webster's seven year old daughter Gracie suffers from SynGAP1, which is a rare neurological disorder caused by a variation or mutation of the SynGAP1 gene.

But this little cowgirl isn't letting her differences stop her from saddling up and getting on with things, exhibiting the grit and determination of a true country kid.

There are only approximately 800 people in the world with the rare disorder, meaning not many people know anything about it, much less know how to find a cure or treatment for the diverse and intricate neurological symptoms.

This lack of awareness was what sparked the Webster's desire to raise funds for SynGAP1 research through the campdraft arena.

"They're in preclinical trials with treatments and cures for the disorder, so we thought, what could we do to try and raise awareness and help in the research or in the fundraising efforts," Ms Webster said.

"That how the draft came about because we're heavily involved in the campdrafting community and they've always been great rallying behind these sorts of things.

"Our main aim is to raise awareness for SynGAP and just try to circulate it as much as we can so that, in turn, it might trigger the interest of scientists or relevant pharmaceutical companies and they might invest more heavily in the research."

The Websters only discovered that Gracie had SynGAP1 after many appointments, tests, and several trips to see specialists in the US, which were no mean feat for a family living in south west Queensland and running cattle operations.

"It's very hectic and at times a very big challenge, but we just make it work," Ms Webster said.

"We're 67 kilometres from our nearest town, which is Wandoan and there's no services, like the speech and OT therapy that Gracie needs, so the closest is Chinchilla, which is 160 kilometres away.

"So, from when she was two until now, we've driven everywhere and it's taken us to the states on two occasions.

"We even debated staying over in the States long term because we actually found substantial help and organisations that were willing to help us whereas here, we actually found it quite difficult in the beginning.

"So that's been the hardest thing, just accessing health care."

Gracie now does a lot of her appointments and therapy via a Telehealth program, with the help of her Mum and governess, but there was a time when the family were encouraged to move from their fifth generation property for access to better health care.

"We were actually told when she was two that we should uproot our life and move because Gracie needed such significant support," Ms Webster said.

"We made the decision as a family that that wasn't going to be the case and to look at other avenues because we felt that home was the best place for her despite the lack of medical services.

"When we go to the city Gracie is reserved and she doesn't really like it. It's too confronting, daunting and too fast paced, whereas at home, she rides her horse and she just loves it."



Despite the years of challenges, Gracie now attends school, does gymnastics, and even rode in her first campdraft a couple of weeks ago.

Ms Webster said they always made a point of raising their daughter to be no different to her peers, and said that the lengthy diagnosis process was a blessing in disguise as it meant that Gracie grew up like a regular bush kid.

"If your child is linked to a condition, you tend to protect and shelter them, and probably not let them go out of their comfort zone.

"Whereas, we've always said no, come on Gracie, we're going mustering."

The campdraft will run from the 6th to the 8th of May at the Wandoan showgrounds, including entertainment and a stallion auction on Saturday night.

Due to an estimated influx of nominations, they will only be open for 24 hours from 8am April 19th on Campdraft Central.



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Clare Adcock

Clare Adcock

Roma Journalist - Queensland Country Life

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