Fight with Chanae against SMA- wheelchair accessible vehicle

August is Spinal Muscular Atrophy awareness month and Chanae's birthday. We are hoping to raise funds for a wheelchair accessible vehicle. Giving chanae the freedom to participate in the community and attend numerous vital appointments.

If you could spare a little or know of anyone who can please share. If not just spreading awareness around Spinal Muscular Atrophy is enough. Thankyou for taking the time to hear our daughters story and educate yourself on a serious condition.

Our daughter was diagnosed with a lifelong condition called Spinal Muscular Atrophy type 2 October 2023.Spinal muscular atrophy is a condition that affects the motor neurons in the spinal cord which leads to progressive muscle atrophy, weakness and paralysis.

This is Chanaes story and the challenges shes had and still has. She has faced things no child ever should.

Not only has she been poked and prodded on numerous occasions, she’s had 8 lumbar punctures as part of her treatment, been sedated, given anaesthesia (isn’t great for SMA sufferers) and been hospitalised 7 times in one year. This has all been just to keep her in good health. Chanae has gone through things no kid should have too and will continue to. Her treatments (Spinraza lumbar punctures) alone are every 4 months for the rest of her life. As of May 2024 she has had a feeding tube and is now nil by mouth. Common complications include weakning of the eating muscles, included is lungs and heart.

Because of the weakening of muscles Chanae has also had a hard road in mobility. She was once happily participating in tummy time and loved her jolly jumper before 9 months when her muscles started to deteriorate. She became floppy and fatigued easy, all common effects of her diagnosis. She has physio twice a week, Occupational therapy, Speech therapy, several trials for equipment and support aids, health teams through two hospitals made up of neurologist, respiratory, paediatricians, allied health and so many more wonderful health professionals. Many whom never heard of Spinal Muscular Atrophy till Chanae.

Some equipment chanae uses on a daily basis include bipap, pulse oximeter machine and a feeding machine. Some trials of equipment include a supportive stroller, a wheelchair, a stander with a lot more to come so she too can have some mobility back. At this point she’s considered a sitter, she cannot crawl or walk and relys a lot on those around her to move. Through all of this she has been a happy, bright, eager child. She wants to be a part of everything. She loves music and animals. She is the softest most beautiful soul you’ll ever come across.