Feeling lost and alone, Claire and Mark Murray spent much of this year at Sydney Children's Hospital in Randwick, where their son Lachlan was being treated for a rare form of epilepsy.
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Born this February, he had his first seizure at two days old and was later diagnosed with early infantile epileptic encephalopathy - a neurological disorder that impacts newborns in the form of epileptic seizures.
Lachlan passed away due to a chest infection in August. However, his mother said that throughout his short life there were times when he had hundreds of seizures a day.
He was in and out of hospital for six months, and sadly passed away just four days after his parents were married.
"I remember feeling very alone because I did not have anyone to ask," Ms Murray said.
"I wanted someone to tell me, know what was happening."
It was a frightening time for the young mother, who said it was hard staying in the hospitals in uncomfortable beds, sharing rooms with other parents, including those there by themselves, or who had travelled for hours to stay with their kids.
She remembers some parents not having money for a coffee or food, not having toiletries, and the hospital not having sanitary products when she was there.
To honour her son before his first birthday on February 9, Ms Murray wants everyone to know his name.
In order to make the long stays for parents with children with epilepsy easier, she plans to fundraise to organise packs with coffee, lunch and dinner vouchers from the hospital, toiletries, and other essentials.
They will be called Lachlan's Lucky Dip.
"I knew I wanted to do something to something important for him and I didn't know what that was," she said.
The response has been nothing but positive.
Her goal has been to raise $500 which has been surpassed, with the key message being for adults to feel less alone, and to raise awareness.
Claire plans to hold a month-long raffle in February, with ticket buckets in the Highlands and Wollondilly.
The prizes will be from both regions, and she will display purple decorations, as the colour is associated with epilepsy.
To learn more, head to @lachlanslucky_dip on Instagram and Lachlan's Lucky Dip on Facebook.
Briannah Devlin
I like to write about arts, entertainment, any local reality tv leads, and property for the Southern Highland News and Goulburn Post, but also report on everything in between. If you have any tips, please send them to Briannah.Devlin@austcommunitymedia.com.au, or call 0439142204.
I like to write about arts, entertainment, any local reality tv leads, and property for the Southern Highland News and Goulburn Post, but also report on everything in between. If you have any tips, please send them to Briannah.Devlin@austcommunitymedia.com.au, or call 0439142204.
