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

06 Aug 2026 by Angela Leta Kaye

$500 done!! 💖

Thank you so much to my gorgeous friends and family who have donated - last year I struggled to get to $500. This year we’ve smashed it. Trying to keep the momentum going, so let’s aim higher!!

06 Aug 2026 by Angela Leta Kaye

Adeline and I chatting about fundraising!

@bplotgirls
Donate if you can!! Link in bio 💖 #cdkl5 #raredisease @Jeans for Genes Australia
♬ Sunlight On The Sill - Kenta Yamaguchi

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! 💪

Raised so far

With your help, I have raised...

$1,029

You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!

Biggest Donor

Geoff Lee

$110

Thank you so much to my biggest supporter, Geoff Lee, for donating an incredible $110 to help fund vital research into curing children’s genetic diseases.

My Impact

So far this year, I've helped fund...

20

Hours of research

Every $50 raised funds an hour of vital research.

Latest donations

$ 61.36

Matched Gift donated at today

"Your donation has been doubled by our sponsors!"

$ 61.36

Jessica Tillett donated at today

"I’m donating for Jeans for Genes Day this year in honour of Adeline. She’s such a bright, strong little girl, and Michael, seeing the way you show up for her while doing the incredible work you do here at RFDS is genuinely inspiring. Anna, your such a beautiful mumma and you are just perfect for Adeline, hope this small contribution helps support the research and care that makes a real difference for families like yours.Thinking of Adeline always xx"