Like most parents, Kate and David New from Glenwood were emotional when their daughter started to walk and talk, but unlike most parents, it was because they had missed that joy with their first-born son Lachlan.
He is one of the faces of this year’s Jeans for Genes campaign.
“We love him immensely, but he’s had it hard … I’m amazed when I see my daughter walk or talk just naturally. Lachy can’t communicate. He’s nonverbal, and we never thought he’d be able to walk,’ says Kate.
From the moment Lachlan was born, Kate had sensed something wasn’t quite right, especially when she compared him to other children. He wasn’t standing up or crawling but she was told to be patient.
“It just took a while for me to convince other people, because everyone thought that I was making it up,’’ Kate says while wiping tears from her eyes. “I don’t know why any parent would want to make that up.’’
Instead of waiting for a diagnosis, Kate and David started Lachlan on therapies, and when he was around 18 months old, they were told he was somewhere on the autism spectrum, with hypertonic cerebral palsy and global developmental delay. At two years of age, they were finally given the results of genetic testing which showed that he had a problem with his SCN2A gene.
“So, there’s the autism spectrum side, which he’s definitely impacted by. But there’s also an epilepsy, seizure side of things. We’ve been fortunate enough that Lachy hasn’t had any epileptic seizures as yet. He seems to be quite severely, intellectually delayed. So, we feel like he’ll be dependent on us for the rest of his life. But we’re very hopeful.’’
Research and being involved in Jeans for Genes and the work done at Children’s Medical Research Institute is what gives Kate hope.
“Research is everything to us. We feel like we’ve exhausted all therapy options for Lachy, and we continue to day-to-day,’’ Kate said “Until genetic research is extended to help, nothing’s going to change for him, nothing.’’
Kate looks at the positives, that Lachlan isn’t regressing, and hopes research will help with his symptoms one day to improve everyday life.
“There’s lots of research going on in the gene therapy field. So, I’m very, very hopeful that genetic research will open up some doors for him,’’ Kate said.
Kate said she feels like the COVID-19 experience has helped people understand her life.
“’I feel like now people understand what social isolation is, because that’s the norm for us. That’s our day-to-day life. We never go to the shops or to a sports ground. Lachy will just run off, and as part of his sensory issues, he touches and licks everything, so I have to watch him so carefully.
“I hope this experience shows people how important research is. The only way life will return to normal after COVID-19 is a vaccine. For us, I feel so strongly that people need to value research. I look at scientists that dedicate their lives to this research, and they are superheroes in my eyes.’’
Jeans for Genes is the iconic fundraising campaign behind Children’s Medical Research Institute, which aims to find cures for children’s genetic diseases.
The big day is on Friday, August 7, but you can sign up now to start fundraising online at jeansforgenes.org.au and make a lasting different to generations of children.