Jeans for Genes

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I’m fundraising in honour of Adeline.

Why I’m skipping

I’m skipping for Adeline 🌸 who is 6 and loves with CDKL5 deficiency disorder, leading to treatment resistant epilepsy, developmental delays meaning she can’t walk or talk, and a vulnerability to infection and illnesses. I am Adeline’s support worker, but I’ve worked with her for half of her life now, and she is family. Adeline loves books, her vision device, and her family.

I’m skipping for Remma Rose 🌹 who passed away of an incredibly rare kind of cancer in her spine, Mesenchymal Chondrosarcoma, in 2019, after a 15 year battle that started when she was only 9 years old. She was an accomplished archer, dancer, make up artist, and the world is poorer without her.

I’m skipping for Everleigh 🌻 who passed way just before her 3rd birthday from WOREE syndrome that led her to have dozens of seizures daily. She loved to look at her fairy garden that her younger sister Hadley now enjoys.

I’m skipping for everyone supported by the amazing Neuromuscular WA, you know you who are 💖 They are boys like Spencer, who has Duchenne Muscular Dystrophy, and faces the slow loss of his ability to move and breathe - unless research finds a solution.

These conditions are individually extremely rare. But I have some sort of personal connections with all three of these families or genetic conditions - the diseases might be rare but the experience of having or supporting someone with a rare disease is not.

1 in 20 Aussie kids who face a birth defect or genetic disease, like cancer. Most people don’t know that cancer is caused by changes in genes—but almost everyone will be touched by it. So, the research you and I support today may one day help someone we know, someone in our family.

There’s lots of work to do, but there is also lots of hope.

Join me. Share this message. Donate. Thank You!

Latest updates

10 Jul 2026 by Angela Leta Kaye

Another option to donating money!

Donated plasma with my pal Michael, they’re a close mate and my regular donation buddy - but you don’t have to be a regular donor to make a difference. Sick kids often need plasma or whole blood, pop over to Lifeblood to make a donation however regularly works for you! 💪