Sarah Blackman with her nephew Harlow Landrigan, who has Aicardi-Goutières Syndrome (AGS). Sarah will raise money for Harlow and his family by running the Gold Coast Half Marathon.
Sarah Blackman with her nephew Harlow Landrigan, who has Aicardi-Goutières Syndrome (AGS). Sarah will raise money for Harlow and his family by running the Gold Coast Half Marathon. Adam Hourigan

Sarah's marathon effort to support young Harlow

FOR more than a year, Sarah Blackman has wanted to help her brother Shane Landrigan and his partner Meg Lamrock to raise money for the care of their son Harlow.

Harlow was diagnosed with an extremely rare neuro-degenerative disorder Aicardi-Goutières- Syndrome (AGS) from eight months, and while he is dependent on his parents for every aspect of his care, they refused Sarah's offer at every stage.

So she offered to run a long way. "I've run one before. It's a half marathon," Sarah said.

"It's definitely a long way," Meg countered.

Ms Blackman will strap on the boots, and take on the Gold Coast Half Marathon, and through a GoFundMe page "Running for Harlow" is asking for donations to encourage her to the finish line.

"I hit the wall at 19.5km the last time I ran it," Ms Blackman said.

Already, nine days after they launched the appeal, more than $6000 has been donated to the page, something which Ms Lamrock said she was humbled by, and thankful for.

"She's done an amazing job, everyone who's donated it's just ridiculous," she said.

Ms Lamrock said her little boy is tube fed, non-verbal and has extreme hypertonia and low muscle tone which means he is unable to sit, stand or walk.

"But he's pretty cruisy. He loves laying around, watching movies, loves swimming and being pushed around in the pram."

And while there were immediate needs for Harlow, she said it was hard to tell what Harlow required going into the future as he grew

"So the money might be used for things like wheelchairs that he may need... but we also thought it'd be good to give back to some of the places who have helped us, like Grafton Base Hospital who have been amazing, and Ronald McDonald House who we've stayed with.

Ms Lamrock said the care of their precious boy was harder, but it was also all they knew.

"But people say you make it look so easy," Ms Blackman said. "You just get on with it, you've never complained, you just do it."

And that's what Ms Blackman plans to do with the marathon, this time with Harlow's family in full support.

"We're definitely going up to watch her," Ms Lamrock said.

For donations, visit the GoFundMe page at: https://www.gofundme.com/running-4-harlow