LAPS FOR LACHY

Genes Day campaign
Lachy celebrated his 5th birthday at home last month with sister Meadow, 2, and parents Kate and David

Kate New is motivated by her young son Lachlan every day and is committed to raising money to support the Jeans for Genes Day campaign.

‘The Glenwood mum will be running 5kms daily for a week as part of her Laps for Lachy campaign to support the work of the Children’s Medical Research Institute.

Her first day kicks off tomorrow, August 1. She will be joined by friends and family on Jeans for Genes Day, August 7, when they plan to run in their jeans. Kate and her husband David welcomed their first born, “Lachy”, into the world in 2015. After a few months Kate became concerned about his development. Lachy was 18 months old when tests revealed that there was a problem with his SCN2A gene.

Lachy is on the autism spectrum, had hypertonic cerebral palsy and global development delay. “I’ve always been supporter for Jeans for Genes,” says Kate. I can remember donating back when was at school. “When people think of genetic disease, I think they think it won’t ever affect them… I mean we certainly never did.”

“The thing is genetic disease is far reaching- It can mean so many things from neurological conditions like Lachy’s, to metabolic disorders and even many types of cancer. The flip side to that is that discoveries in that field can have far reaching benefits- and that’s exciting. We have tried every therapy under the sun for Lachy and we have so much hope that genetic therapies will be available and highly effective in the future.“

“Sharing Lachy’s story and exposing our vulnerabilities was much tougher than we expected it to be. However, we know that genetic medicine is on the cusp of something huge and we very much want to be a part of that.”

The couple’s daughter Meadow is 2. “(She) looks out for him in ways you would never expect a 2-year-old to,” says Kate. “She calls him ‘my Lachy’. We get so excited when we hear the two of them laughing at the same time, as it’s not often Lachy finds normal things funny- so it’s a good insight into his world.”

While Kate admits to being “a bit too chicken” about cold early morning runs she plans to get her run in during her lunch break while working from home.

“The time pressure helps me to run faster. I’m also very lucky to have some awesome friends and members of the running community that I don’t even know who have also taken up the challenge.

“It’s about raising awareness not only about kids like Lachy, but also the universal applications of the work that CMRI do. We are so lucky to have so much support in advocating for SCN2A and Jeans for Genes Day. My hope is that people understand that our genes are fundamental to so many medically complex issues our loved ones are or will be facing. The wonderful research that CMRI engages in isn’t just about helping out medically complex kids- it really is about targeting disease where it starts (in many cases), and that has benefits for us all.”

The link to the Laps for Lachy donation page is www.myjeansforgenes.org.au/laps-forlachy. So far, the family has raised $3000.

While COVID-19 have put a halt to the big fundraising Lachys young cousins have arranged a ‘pop up stall’ and the family is organising an online raffle.

For more details visit their Facebook page. facebook.com/events/s/laps-for-lachy-jeans-forgenes/2285804584899480/?ti=icl

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