Help Support Kaiden’s Battle With DMD – The Freedom to Move

Hello Family, Friends and Community,

I am reaching out to ask for your support for my sister Maddison, and her incredible son - my nephew, Kaiden.

Kaiden is a beautiful 9 year old boy who has had to face extraordinary challenges in his short life. He is Autistic, and in 2023, was diagnosed with Duchenne Muscular Dystrophy (DMD). Whilst rare, DMD is an incurable, progressive, and ultimately fatal neuromuscular disease. It gradually weakens muscles, robbing children of their ability to walk, run, jump and more. Most kids affected by DMD require a wheelchair by the age of 12, and as the disease progresses, it will begin to impact their heart and respiratory muscles as they reach their teens and early 20s.

Despite these challenges, Kaiden has embraced his rapidly changing lifestyle, and loves and inspires everyone around him. He is under the care of a neurologist at Perth Children’s Hospital, where he attends multiple appointments throughout the year. He also receives vital support from a dedicated therapy team to help him maintain his independence for as long as possible.

Kaiden is now in the 'early non-ambulatory stage' of DMD. This means he can only walk very short distances and relies heavily on his motorised mobility scooter, which he is rapidly outgrowing. He needs assistance with most daily activities - such as getting in and out of the car, using the toilet, sitting on the couch, and even requires being repositioned multiple times throughout the night. Kaiden is a big fall risk, and when he falls, he falls hard as he does not have the ability to brace himself before impact. This disease means his body is also losing the ability to heal itself, so any injuries he sustains by falling have increasingly serious consequences. He now has several support devices at home to assist with these activities, and to help Maddie to protect her back.

Kaiden's condition is rapidly declining, and he now requires a Permobil F5 power wheelchair to support his mobility and safety. This wheelchair weighs approximately 200kg, and requires a specialised vehicle for safe transportation.

Right now, Maddie drives a Suzuki Swift, which cannot accommodate this power-chair. To ensure Kaiden can continue having access to travel, we need to purchase a Hyundai Staria. This is a vehicle that can be modified to allow the power-chair to drive up a ramp and park inside, where he can be securely strapped in while remaining in his power-chair.

The NDIS covers the modification of the vehicle, but is unable to assist with the purchase of the vehicle itself. This is where we now have to reach out and ask our community for help. We are currently researching for available grants or programs that are in place to help with this kind of thing, however any assistance we receive will still leave us with a significant out of pocket expense.

Any contribution you can make towards this car will help us provide a life-changing impact on Kaiden’s quality of life, and help my sister to continue providing him the best care possible.

I know that times are tough right now, so I just want to say thank you for taking the time to read this through. If you are able to contribute, any amount big or small will make the world of difference to my family. If you are unable to donate, please consider sharing this fundraiser with others who might be able to help or reach out to me with any info. Your kindness and support means the world to us.

With love and gratitude,

Kaiden’s Aunty Jordan