Jonah's Whale

please Share my page

Why I'm doing Jeans for Genes

Hello Everyone! Yet again this year we are fundraising for Jeans for Genes Day in the hope of raising some money for the amazing scientists at the CMRI and also to raise awareness of the condition Jonah has.

Alot of our family and friends know of Jonah's condition and the journey our boy has been on in his 4 years of life so far. We are amazed at the resilience of Jonah and the way he has coped with the downfalls of having his condition, Congenital Myasthenic Syndrome. He is currently on medication which controls his muscle weakness most of the time, and enough for him to get through each day. He still struggles with weakness, especially if he's had a big day or been very active. We spent alot of time in and out of the Royal Children's Hospital's ICU and Neurology ward in the first 2 years of his life, and almost lost our boy a few times. We are blessed to still have him in our lives.

Congenital Myasthenic Syndrome falls under the umbrella of Muscular Dystrophy and is a diverse disease caused by genetic defects affecting neuromuscular transmission. individuals affected have muscle weakness (myasthenia) that worsens with physical exertion. There are at least 32 different genes that can cause CMS and each gene can mean different things to the individuals effected.

The most commonly affected muscles are the facial muscles, including muscles that control the eyelids, move the eyes and for chewing and swallowing. All of the muscles used for movement (skeletal muscles) are affected also. CMS is quite rare and so the long-term outcome is not well known.

Many people affected with this condition have developmental delays, and episodes of breathing problems (which will vary in severity and usually result in hospitalisation, especially when it is related to a fever or infection).

The exact number of people with Congenital Myasthenic Syndromes is unknown. Some studies suggest that between 2-12 people per 1,000,000 may have CMS. With 14% of them being caused by the RAPSYN gene. 


So please, continue to help us raise money for this amazing cause and help scientists continue to create medications and possibly cures, that can help children like Jonah to live a normal and happy life! 


Thank you. 

Latest donations

$ 20.88

Anonymous donated at 3 months ago

$ 52.20

Riverwalk Primary School Kindergarten donated at 3 months ago

"Our jeans for genes day raised $50 from kindergarten to help support this amazing cause Jonah 👏🏼"

$ 10.44

Anonymous donated at 3 months ago

$ 10.44

Aanya Nain donated at 3 months ago

$ 40

Nicole Timms donated at 3 months ago

"My little Jonah, I miss your cheeky laugh and all of the silly faces!! You are the bravest most resilient young boy I have ever met... Don't stop being you ❤️❤️"

$ 20

Anne Farrugia donated at 3 months ago

"<3"

$ 20

Vamika Gupta donated at 3 months ago

"Hey Little buddy ... We hope you feel better each coming day. May God bless you with good health, that's all we pray. Get well soon"

$ 108.58

Final Touch Property Solutions donated at 3 months ago

$ 108.58

Mitchell Lawson’s donated at 3 months ago

$ 20.88

The Ahern’s donated at 3 months ago

"For an awesome little boy"

$ 31.32

Todd Robinson donated at 3 months ago

$ 20.88

Jack Galna-latchmea donated at 3 months ago

$ 20

Emily Goegan donated at 3 months ago

$ 31.32

Steph Day donated at 3 months ago

"You rock Jonah! xx"

$ 20.88

Gemma Fowler donated at 3 months ago

$ 20.88

Sue Machler donated at 3 months ago

$ 55.33

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 55.33

Amanda Rose donated at 3 months ago

"You’re all amazing!!"

$ 30

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 30

Jackie Daniali donated at 3 months ago

"♥️"

$ 40

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 40

Rachael Cunningham donated at 3 months ago

$ 36.54

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 36.54

James Peterson donated at 3 months ago

$ 20.88

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20.88

Amberly Morison donated at 3 months ago

$ 36.54

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 36.54

Taylah Hunter-gerber donated at 3 months ago

"$1 from Every Student in 5D at Saltwater College"

$ 108.58

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 108.58

Anthony Shaw donated at 3 months ago

"Keep being awesome Jonah"

$ 10

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 10

Jennie Douglas Weston donated at 3 months ago

"Well done Jonah I hope you reach your goal 😉"

$ 10.44

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 10.44

Amandeep Kaur Romana donated at 3 months ago

$ 53

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 53

Miss Colling donated at 3 months ago

"Sorry we couldn't be celebrating all together today, but this is for you Jonah and the Machler family x"

$ 31.32

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 31.32

Sarah M donated at 3 months ago

"For you Jonah X"

$ 20.88

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20.88

Anonymous donated at 3 months ago

$ 55.33

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 55.33

Kristie Chan-sau donated at 3 months ago

$ 10.44

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 10.44

Seren Humphrey donated at 3 months ago

"I hop you have a lovely jeans for genes day with Jonah"

$ 108.58

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 108.58

Anonymous donated at 3 months ago

$ 30

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 30

Veronica Mikulic donated at 3 months ago

$ 52.20

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 52.20

Elise Clark donated at 3 months ago

$ 20.88

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20.88

Anonymous donated at 3 months ago

$ 104.40

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 104.40

Warren And Coralea Matas donated at 3 months ago

"We love you JONAH and have loved watching your milestones and resilience. Big hugs to your mumma bear Leigh and her determination to see you strive xoxoxo"

$ 20

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20

Melissa Lilley donated at 3 months ago

$ 20.88

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20.88

Hayley Kan donated at 3 months ago

$ 20

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20

Ahaana Suryanarayanan donated at 3 months ago

$ 10.44

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 10.44

Lucy Mackintosh donated at 3 months ago

$ 20.88

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 20.88

Logan & Mckenzie Herselman donated at 3 months ago

$ 15.66

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 15.66

Katrina Smith donated at 3 months ago

"You’re one amazing little boy, so strong and determined! You’ll go a long way with the guidance and support of your loving family xo"

$ 22.97

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 22.97

Anonymous donated at 3 months ago

$ 15.66

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 15.66

Denae, Rob, Tahlia And Charlotte donated at 3 months ago

$ 53

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 53

Jenna Millanta donated at 3 months ago

"Love you Jonah 🐳❤️"

$ 10.44

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 10.44

Hudson Box donated at 3 months ago

$ 55.33

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 55.33

Renee Belsey donated at 3 months ago

"From The Belsey Clan xxxx"

$ 26.10

Matched Gift donated at 3 months ago

"Your donation has been doubled"

$ 26.10

Jacqueline Domanski donated at 3 months ago

"God bless you little warrior"

$ 55.33

Stephanie Levy donated at 4 months ago

"Go get ‘em Jonah!! X"

$ 255

Anonymous donated at 5 months ago

"A BIG thank you for all your work these past 2 years in SEI!"

$ 55.33

Sue And John Dobson donated at 5 months ago

"We love you, our little champion xx"

$ 20.88

Taren Ashcroft donated at 5 months ago

$ 55.33

Louise Shapter donated at 5 months ago

"Love u crazy boy 😊 x"

$ 108.58

Joanne Bottin donated at 5 months ago

"Our tough little warrior Jonah, we are so very proud of you xx"

My Achievements

Created a Team

Reached 25% of fundraising target

Reached 50% of fundraising target

Reached 75% of fundraising target

Reached 90% of fundraising target

Reached 100% of fundraising target

Set a higher target for myself

Made a self-donation

Shared on social media

Uploaded Profile Picture

Received 5 donations

Updated Blog