Wearing Jeans for Jonah

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Why we're doing Jeans for Genes' Wear Your Jeans

Jonah was assisted into this world in the early hours of September 9th. He was completely floppy and needed oxygen. He was taken to the special care and we saw him later that morning. He was in a humidicrib and needed oxygen around the clock. At 30 hours old, in front of us, he stopped breathing. He was placed on a ventilator and transferred to Neonatal Intensive Care at the Royal Women’s. And so started a year journey to find out what was wrong with our little man. He stopped breathing every time he got sick and was ventilated a further 4 times. We almost lost him. Many times.

After a lot of testing, we were informed he had a genetic condition called Congenital Myasthenic Syndrome due to a defective Rapsyn gene. His father and I both have one normal and one defective Rapsyn gene and passed both of our defective ones to Jonah causing this condition. No one in either of our families has ever had this condition so it was a shock to everyone.

CMS is extremely rare. Effecting 2-12 in 1,000,000 people and within that, there are 32 different gene defects that cause it. Rapsyn is responsible for 14% of diagnosis. It is a neuromuscular condition causing severe muscle weakness and can be very debilitating.

Luckily for Jonah, he is able to take medication to assist him to walk, talk and remain upright all day. He is currently on 19 tablets a day and has physio and other therapy each fortnight. He still has little battles and needs to be watched a little closer.

Jonah is a fighter and has gotten through some extremely tough times. He, like many other children, will have to work his way through life managing his condition. Jeans for Genes Day is a great way to recognise the children fighting these conditions and to raise money for the scientists who work so hard to find cures.

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Our Impact

So far this year we helped provide...

60

Hours of research

For every $55 raised, one hour of research is funded

Thank you to our Sponsors

$397

Riverbend Primary School

From our amazing Riverbend community!

1 month ago

$17

3/4 Hs

1 month ago

$21

Denialeonmefi

1 month ago

$55

Jenna Millanta

Love you Jonah ❤️❤️❤️

2 months ago

$25

Pennie Hazell

2 months ago

$11

Mrs Smith

2 months ago

$21

Teagan Lane

2 months ago

$6

Jeans For Genes

Your donation has been doubled

2 months ago

$6

Riverwalk Primary School - 34sw

2 months ago

$11

Jeans For Genes

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2 months ago

$11

Jacob And Eli Johnson

from Jacob and Eli

2 months ago

$1

Jeans For Genes

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2 months ago

$1

Kiaan Patel

Kiaan Patel

2 months ago

$56

Jeans For Genes

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2 months ago

$56

Rashmi Nayak

2 months ago

$10

Jeans For Genes

Your donation has been doubled

2 months ago

$10

Abigail Lowman

2 months ago

$5

Jeans For Genes

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2 months ago

$5

Talia Painter

2 months ago

$10

Jeans For Genes

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2 months ago

$10

Andrea

2 months ago

$32

Jeans For Genes

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2 months ago

$32

Anonymous

2 months ago

$56

Jeans For Genes

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2 months ago

$56

Anonymous

2 months ago

$56

Jeans For Genes

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2 months ago

$56

Anonymous

2 months ago

$21

Hunter Tanner Lowe

2 months ago

$21

Jeans For Genes

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2 months ago

$12

Jeans For Genes

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2 months ago

$12

Tavleen Kaur

2 months ago

$21

Jeans For Genes

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2 months ago

$21

Sheeba Bhaskaran

2 months ago

$5

Jeans For Genes

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2 months ago

$5

Anonymous

2 months ago

$56

Jeans For Genes

Your donation has been doubled

2 months ago

$56

Rachel Wallace

2 months ago

$5

Jeans For Genes

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2 months ago

$5

Kai Doig

2 months ago

$11

Jeans For Genes

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2 months ago

$11

Anonymous

2 months ago

$21

Jeans For Genes

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2 months ago

$21

Kristie Chan-sau

2 months ago

$56

Jeans For Genes

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2 months ago

$56

The Hunters

Way to go sis! Keep up the good work x

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Lauren Zausa

2 months ago

$5

Jeans For Genes

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2 months ago

$5

Myla Morrison

2 months ago

$21

Jeans For Genes

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2 months ago

$21

Lucy Hazell

2 months ago

$12

Jeans For Genes

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2 months ago

$12

Melanie Lee Wright

2 months ago

$90

Jeans For Genes

Your donation has been doubled

2 months ago

$90

Lara Lunardi

2 months ago

$16

Jeans For Genes

Your donation has been doubled

2 months ago

$16

Caitlin Clancy

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Cassandra Ison

2 months ago

$5

Jeans For Genes

Your donation has been doubled

2 months ago

$5

Leo Drummond

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$11

Upendra Soppa

2 months ago

$5

Jeans For Genes

Your donation has been doubled

2 months ago

$5

Anonymous

2 months ago

$22

Jeans For Genes

Your donation has been doubled

2 months ago

$22

Edie And Billy Isaac

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$11

Shelley Crawford

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Mason & Hunter Karamoskos

2 months ago

$5

Jeans For Genes

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2 months ago

$5

Amethyst ?

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Crystal Maui

2 months ago

$5

Jeans For Genes

Your donation has been doubled

2 months ago

$5

Symone Healy

2 months ago

$5

Jeans For Genes

Your donation has been doubled

2 months ago

$5

Peake Family

2 months ago

$5

Jeans For Genes

Your donation has been doubled

2 months ago

$5

Nate Duscha

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$11

Anonymous

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Kylie Stephens

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$21

Carolyn Fletcher

Thanks for the opportunity to support this cause 🙂

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$11

Katie Ferguson

2 months ago

$55

Jeans For Genes

Your donation has been doubled

2 months ago

$55

Freemans ??

Big love to you all 💪🏼💪🏼

2 months ago

$21

Lisa Conibeer

2 months ago

$21

Jeans For Genes

Your donation has been doubled

2 months ago

$56

Jeans For Genes

Your donation has been doubled

2 months ago

$56

Gwyneth Wenlock

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$11

Anonymous

2 months ago

$91

Jeans For Genes

Your donation has been doubled

2 months ago

$91

Joanne Bottin

❤️🐳

2 months ago

$11

Annie Chidlow

2 months ago

$11

Jeans For Genes

Your donation has been doubled

2 months ago

$51

Jeans For Genes

Your donation has been doubled

2 months ago

$51

Piper & Jai Copley

2 months ago

$110

Jeans For Genes

Your donation has been doubled

2 months ago

$110

Anonymous

2 months ago

$11

Charlotte Aquilina

2 months ago

$11

Niamh Murphy

2 months ago

$110

Skip

You’re an awesome mum and I hope one day we find a cure for everyone 💜

2 months ago

$10

Daniela Lim

Donation in honor of Rex and Mia Cutler

2 months ago

$16

Anonymous

2 months ago

$11

Prakash Banerjee

2 months ago

$56

Sue And John

2 months ago

$16

Danae Abdou

2 months ago

$32

Jenny Dridan

2 months ago

$55

Leigh Dobson

2 months ago