Finding cures for children's genetic diseases


HSC student plans to highlight Jeans for Genes

“I’ve always been aware of the story behind what happened in our family,’’ the 17-year-old said.

In the late 1990s, within months of her parents marrying, mum Lucia was pregnant. At the 19-week ultrasound, doctors told her something was wrong.

“I’ll never forget it,’’ Lucia said. “They told me there were a lot of problems. That something was wrong with the baby’s head, it had some major abnormalities. He had half a heart, extra ribs, a lot of physical problems. It was early in our marriage, my husband and I were so young.’’

The baby did not survive and they soon discovered that Lucia had antiphospholipid syndrome, which is an autoimmune disease that can cause miscarriage and stillbirth.

“We didn’t get to enjoy that first year of marriage,’’ Lucia said. “They told me for every pregnancy I had, there was a 25 per cent that this would happen again. I was 26 at the time. I was scared. I was worried I may never have any children.’’

Six months later she was pregnant with Jessica. “It was a major miracle. Everything was fine.’’

They had seven miscarriages in nine years but genetic screening assisted with what Lucia could do to support the pregnancies. They also had another two children: Madeline, now eight, and Adam, now six.

“We feel very blessed.’’

The story was right at the forefront of Jessica’s mind when she was contemplating what theme to use in her year 12 design and technology work at St Ursula’s College.

As well as encouraging her school to register and take part in Jeans for Genes Day on Friday 3rd August, she decided to focus her whole major work around the theme of Jeans for Genes. Jessica will design a denim ball gown, an angel dress for a stillborn baby, and a woven piece of wall art.

“I’ve always liked weaving, and I noticed the resemblance to the DNA helix. Mum reminded me of our genetics and the story. I told my teacher what I wanted to do, and she said the concept flowed beautifully from the research to our family. One stitch in clothing, if you remove it, it can affect the whole piece. It’s just the same with genetics. It’s all connected.’’

Jessica wants to encourage all students, teachers, and schools to sign up now and start raising money for the 25th Anniversary of Jeans for Genes to show their support for genetic research.