Nadiah Violi

Why I’m Choosing 100 Skips a Day This August for Jeans for Genes

As a mum, you never imagine hearing the words, “Your child has a rare genetic condition.” But that’s exactly where our family’s journey began.

Two of my daughters were born with Ectopia Lentis – a rare inherited eye condition where the tiny fibres that hold the eye’s natural lens in place are weak or missing, causing the lens to shift or become dislocated.

For our family, it means appointments at The Children’s Hospital every three months to monitor whether the lenses remain stable and attached. It means daily eye drops for Amarni, patching therapy to help strengthen vision, regular changes to glasses, and living with the uncertainty of what each appointment may bring.

Glasses help improve their vision, but they don’t correct the condition itself. If the lenses become too unstable or significantly affect their sight, the only long-term treatment is delicate eye surgery to remove the natural lens and implant an artificial lens that’s stitched securely into place.

Children living with ectopia lentis often face blurred vision, difficulty focusing, reduce vision in one or both their eyes and increased risk of complications if the lens moves further out of position. 

Early diagnosis and ongoing monitoring are incredibly important to protect their vision and give them the best possible outcome.

Watching your children face challenges they never asked for is one of the hardest parts of being a parent. But it’s also taught me something incredibly important: when life gives you something you can’t change, you can choose how you respond.

This August, I’m taking on a simple challenge: 100 skips every day to support Jeans for Genes.

One hundred skips might not seem like much, but every single skip is for my girls. It’s a reminder of their strength, their resilience, and the many families walking a similar path with genetic conditions.

Research changes lives.

Without research, many families are left searching for answers. Research gives hope for earlier diagnosis, a better understanding of rare conditions, improved treatments and, one day, better outcomes for children living with genetic diseases.

I’m incredibly grateful for the doctors, specialists and researchers who dedicate their lives to caring for children like my daughters and advancing research into rare genetic conditions. Their work gives families like ours something priceless—hope.

If sharing our story encourages even one person to learn more about genetic conditions, support Jeans for Genes, or donate towards life-changing research, then sharing our journey is worth it.

Throughout August, I’ll be sharing my daily progress, celebrating every milestone, and reminding myself why I started.

For my daughters.

For every child living with a genetic condition.

For every family searching for answers.

For a future where more children have access to earlier diagnoses, better treatments and brighter futures.

Thank you for following along, cheering me on, or supporting this incredible cause in any way you can. Every conversation, every donation and every act of kindness helps make a difference.

Here’s to 100 skips a day—and to a future where no family has to face a rare genetic condition without hope.