Sydney girl stars in new Jeans for Genes campaign

When your child has a genetic disease, half the battle can often be getting a diagnosis, and that was the frustration for one of this year’s Jeans for Genes stars.

August 01 2019

When your child has a genetic disease, half the battle can often be getting a diagnosis, and that was the frustration for one of this year’s Jeans for Genes stars.

Naomi, from Hornsby, is one of seven young children featured in this year’s campaign who are living with genetic diseases, ranging from severe metabolic and neurological disorders to cancer.

Jeans for Genes is the iconic fundraising campaign of Children’s Medical Research Institute, which aims to find cures for children’s genetic diseases. There are 1 in 20 children across Australia who face a birth defect or genetic disease – just like Naomi.

She was born with a cleft in her soft palate, but other than that there were no obvious signs of concern for her parents, Dalal and Ivan.

“As she grew, we noticed that Naomi had no speech. She didn’t walk until just after age three. She didn’t sprout her first tooth until about 15 months,’’ mum Dalal says.

“That’s when we started asking questions, serious questions, of our paediatrician.’’

They were told “every child develops differently’’, but they continued to search for answers. It wasn’t until Naomi was two years old that they finally found out she had Glass Syndrome, which is also known as SATB2-associated syndrome.

Jeans for Genes star Naomi

Jeans for Genes star Naomi

Children who present with SATB2-associated syndrome have little to no speech; they would have seizures, developmental delays of a wide spectrum, and intellectual disability.

“In a way, it was horrifying,” Dalal said. “I felt like I was jumping into a world that I had no idea about, and I thought at the time, we’re going to be weaning her off therapy, and we’re going to transition into school, and she’s going to just flourish you know, in the normal way that a kid would. Unfortunately, I had to change that way of thinking very quickly.’’

While the news was overwhelming, Ivan said it has given them a much clearer picture of how to help Naomi in the future, and they are keen for more research to help with earlier diagnosis.

“I think we’ve got a really good picture now on what the diagnosis is for Naomi, and I guess a better understanding to help Naomi, to give her the therapy that she needs and to get her ready for the future. It’s just around the corner. She’s growing up really quickly, and it’s just getting us ready as parents to look after her."

Naomi is now a big sister to baby Esther, and is relishing in her new role, Dalal says.

"It’s a blessing for the whole family having another child. Before the diagnoses, when Naomi was around three we had been thinking of having another baby, we thought she would go to preschool.

"But we thought, if we’re going to have another baby, if something is there something is there, but we’ll just deal with it."

Naomi with her family

Naomi with her family

By sharing her story about life with her daughter Naomi, Dalal wants to give hope to families dealing with a child with special needs.

"If you see Naomi, she looks completely normal – the biggest thing is don’t judge a book by it’s cover. There’s a lot of misconception, doctors would say ‘give it time’, and my family would say the same, when she wasn’t walking.

"I’d have to explain but people wouldn’t get it – they’d think we were being negative or maybe we didn’t try certain things or we don’t have faith in God."

While raising a child with special needs may be a tricky journey, Dalal says it's imperative not to give up hope.

"Remember that what weakens us strengthens us in number," she says.

"Find your support groups and keep going. And do the best you can for your kids because they are worth it."

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