#LetAmeliaLive - funding a second hand powerchair

Amelia is a 27 year old, kind, compassionate and bright person who’s always there for others, no matter their own struggle. They have been a candle in the ME community, bringing light to so many through tireless care and support. But right now they need your help.

Amelia suffers from moderate - severe myalgic encephalomyelitis (ME), a neurological condition that causes them to be mostly housebound, often bedbound, due to the severity of the symptoms.

At their worst, Amelia is unable to tolerate light, sound and even touch. They have lost their ability to swallow numerous times, and have been hospitalized to receive IV hydration and have a feeding tube placed.

Recently they had surgery to place a permanent feeding tube, so they can receive consistent hydration and calories at home.

Amelia lives with extreme daily restrictions on their energy. If they push themselves even just a bit too hard, it can result in a crash lasting multiple weeks, where they’re bedbound and unable to eat, swallow or speak, unable to sit up or tolerate noise or light.

These crashes are physical torture, and also hugely mentally and emotionally draining for Amelia and their loved ones.

Amelia requires a wheelchair to get around, and currently has a self funded tilt in space manual wheelchair, which can become quite painful for them to sit on, due to it being only what they could afford, and the cushion or back not being the right support for them. They use it when they have to exit the house, like recently for an emergency feeding tube change. However, this chair is not suitable for them overall, and is certainly not something they could ever travel overseas with, but is currently the only one they have.

Amelia’s goal is to this year fly to Denmark to see their partner, Liv. Who they haven’t seen in 2.5 years over the pandemic. Amelia and Liv have been together for almost 3 years now, in a long term Long Distance Relationship. However, this trip will not be able to happen, unless Amelia is able to acquire a suitable enough Powerchair to go in for their own safety.

In May 2020, Amelia’s Occupational Therapist, their professor of Neurology and Physiotherapist all wrote detailed, lengthy letters of application for Amelia to receive a powerchair through the National Disability Insurance Scheme (NDIS). At the time, Amelia could not get out of bed without one. However, that application was rejected in late 2020, based on “value for money” meaning the NDIS did not think the benefit of the powerchair was worth the money, as they stated they didn’t think Amelia would ever be able to leave the house without a support worker anyway. They also thought the original quote was too expensive, which Amelia’s OT and Physiotherapist tried to dispute to no avail.

In November 2021 the powerchair was rejected for a second time, and the National Disability Insurance Agency (NDIA) stated that all powerchair related applications must go through the Administrative Appeals Tribunal now. This is a process that creates a massive power imbalance between the NDIA and participant, and can take years to complete. Furthermore, Amelia would have to hire a lawyer and be prepared to spend thousands of dollars to get what they need.

Luckily though, in 2021 Amelia improved and stabilized, and started looking into study again. And was gifted a lightweight powerchair by a friend, which was suitable enough for Amelia at the time due to how well they were. However, due to unforeseen circumstances, Amelia went downhill again just before Christmas in 2021, and the lightweight powerchair stopped working completely around the same time. So now Amelia has no way to transport themselves around whilst out and about. They rely fully on others for that task.

This is why we are now asking the public, Amelia’s community for help, to raise funds for a good and suitable second hand powerchair, so that Amelia can live their life like they deserve to, despite the rejections from the government. Amelia would love to be able to leave the house independently sometimes when they are well enough to, and last while out. They would love to travel overseas too, and see family and their partner. Amelia has a life to live, and is determined not to let something as simple as not having a second hand powerchair stop them.

Can you help?