Before last year, our eldest child Aurelia was a fit and healthy 8 year old. She enjoyed sport, maths and fishing. But in October 2017 we found out that she has a very rare, rapidly progressive degenerative Mitochondrial disorder that has left her physically disabled. Due to lack of medical research her condition remains undefined, however doctors understand that the processes of her condition affects muscle function which causes her symptoms of severe dystonia. This causes her to experience involuntary muscle spasms and spastic postural movements in her limbs. Since her prognosis she has had very restricted movements in her limbs which has affected the way she writes, walks, holds on to things and even the way she sits and eats. All of her symptoms create moderate to severe pain and for an 8 year old who has otherwise been fit and healthy prior to this, it has had a devastating affect on her quality of life. She has since had to be fed through a Nasogastric Tube and recently had an Intrathecal Medication Pump surgically inserted to help give her some pain relief (easing off other oral muscle relaxants) and hopefully enable her more control of her movements. We are currently planning for a PEG button to be inserted as ultimately as her condition progresses her swallow will become unsafe for oral intake.
We have been so blessed to have a huge team of specialist doctors and nurses at the Lady Cilento Children’s Hospital who have helped us navigate this new world of living with a child with a physical disability. We have been fortunate enough to access a suitable wheelchair to enable ease of mobility for Aurelia. Unfortunately, our current vehicle is not suitable to be modified to accommodate Aurelia’s wheelchair. We desperately need a vehicle that will help us transport Aurelia in her wheelchair to and from hospital, school and also allow easier access to the community for family outings and play dates with her friends. Currently we are having to lift Aurelia in and out of the car. She also has a cushion that we use to try and keep her back comfortable while she is in the car. We also have to take apart and reassemble the wheelchair in order to fit into the boot. The wheelchair is very heavy to get in and out of the car and can really take a toll on your back after having to do this repetitively everyday. The reality is, we are not in a financial situation to be able to access a suitable vehicle. With the changes to legislation and the rollout of the NDIS, being new to this whole thing we are still in the process of registering Aurelia with Disability Services to enable access. We only wished we had more time and resources to better prepare us for being able to provide all that we need to meet Aurelia’s care needs but it has been very difficult and stressful for our family to adjust, especially with our new baby and our 5 year old daughter.
Our hope is to purchase an already modified vehicle and also have enough money to have it insured.
We understand that times are tough for everybody right now with the rising cost of living, but we have explored all of our options and we simply do not have the capacity to fund a wheelchair accessible vehicle. So please, no amount is too small. Anything that you can donate to help, will be greatly appreciated. Help us give our angel girl wheels to keep her moving. Thank you and God Bless.