Did you know that 1 in 20 Aussie kids are born with a genetic disease or birth defect? That’s one in every classroom!
This year, I’m taking part in Jeans for Genes to help fund the incredible scientists at Children’s Medical Research Institute, who are working today to change lives tomorrow.
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
I’m fundraising in support of my daughter, Frankie Jane.
Why I’m Supporting Jeans for Genes
Did you know that 1 in 20 Aussie kids are born with a genetic disease or birth defect? That’s one in every classroom!
This year, I’m taking part in Jeans for Genes to help fund the incredible scientists at Children’s Medical Research Institute, who are working today to change lives tomorrow.
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
Latest updates
17 Jul 2026 by Amanda Constable-Hardy
Why this is important to us
💙 Jeans for Genes Day — Frankie’s StoryEvery year, Jeans for Genes Day raises money to support research into childhood genetic conditions. This year, I’m sharing Frankie’s story — because genetics isn’t just science for us. It’s our everyday life, every appointment, every milestone, every challenge, and every triumph.
👶 Frankie’s Diagnosis
Frankie was born with rare chromosomal deletions on chromosome 11. These deletions remove multiple genes that are essential for growth, neurological development, sensory function, muscle tone, and cell regulation.
Her condition isn’t a single syndrome with a neat name. It’s a complex, multi‑gene disorder that affects her in unique ways. There are no other children worldwide with the same genetic profile, which means there is no roadmap — only research, monitoring, and hope.
🌈 How Her Genetics Affect Her Life
👁️ Vision Differences
Frankie has structural differences in both eyes that affect how she sees the world. She requires ongoing ophthalmology monitoring to protect her vision and support her development.
👂 Hearing Concerns
She has underdevelopment of the nerve responsible for hearing on her right side. This affects how she processes sound and contributes to her communication challenges.
🧠 Cranial Nerve VII & VIII Hypoplasia
Frankie has underdevelopment of two cranial nerves on the right side — nerves that control:
- facial movement
- feeding and swallowing
- hearing
- balance
These differences help to explain her facial asymmetry, feeding difficulties, sensory regulation challenges, and hearing issues.
🍽️ Complex Feeding Issues
Feeding has never been simple for Frankie. Because of her cranial nerve differences and muscle tone challenges, she works harder to chew, swallow, and coordinate eating safely. Mealtimes involve strategies, supports, and constant monitoring.
🗣️ Communication Delays
Frankie does not speak very many words. Her neurological and sensory differences make communication harder, but she expresses herself in her own ways — through gestures, sounds, facial expressions, and her incredible determination to sign language which we are all learning, to support her in communicating her wants and needs.
🧬 Cancer Predisposition
Some of the genes missing in Frankie’s deletions are involved in cell growth regulation. Because of this, she has a higher lifetime risk of certain cancers and will require ongoing monitoring throughout her life, which starts sooner than we would like to imagine.
This is one of the hardest parts of her diagnosis — knowing that vigilance will always be part of her future.
🧩 Development & Regulation
Her condition affects:
- muscle tone
- coordination
- sensory processing
- sleep
- emotional regulation
- learning
- growth
She works harder than most children her age, and she does it with extraordinary resilience.
👨👩👧 How It Affects Us as a Family
Having a child with a rare genetic condition means living in a world of:
- specialists
- therapies
- medical uncertainty
- advocacy
- research articles
- early intervention
- constant appointments
- fighting for recognition in systems that don’t understand rare disorders
But it also means celebrating every milestone — because we know how hard she works for each one. Frankie has taught us strength, patience, and the power of community.
💙 Why Donating Matters
Your donation to Jeans for Genes helps fund research that:
- Finds answers for rare, multi‑gene conditions like Frankie’s
- Improves diagnostics, so families get clarity sooner
- Develops treatments that can change children’s futures
- Supports genetic counselling, helping families navigate complex results
- Builds hope for kids who deserve every chance to thrive
Research is the reason families like ours get answers — and the reason future families will get even better ones.
👖 Join Us
If you can, please donate or share our page. Awareness is powerful, and research is life‑changing.
👉 Frankie’s Jeans for Genes page:
Donate on our link
Thank you for supporting our girl and every child living with a genetic condition. 💙
Funds raised over the years
Biggest Donor
Jean-ius Donor
$101
Thank you so much to my biggest supporter, Facebook Donation, for donating an incredible $101 to help fund vital research into curing children’s genetic diseases.
Raised so far
With your help, I have raised...
$471
You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!
Biggest Donor
Facebook Donation
$101
Thank you so much to my biggest supporter, Facebook Donation, for donating an incredible $101 to help fund vital research into curing children’s genetic diseases.
My Impact
So far this year, I've helped fund...
9
Hours of research
Every $50 raised funds an hour of vital research.
Thank you to my donors
$101
Facebook Donation
4 hours ago
$24
Sheridan Travis
7 hours ago
$60
Megan Lynch
1 day ago
$65
Kate Simpson
1 day ago
$55
Anonymous
1 day ago
$55
Laura Scarborough
1 day ago
$55
Matched Donation
1 month ago
$55
Amanda Constable-hardy
1 month ago
