Hello my name is Alysia Kaiser. I am 31 years old. I suffer from a rare form of muscular dystrophy which is muscle wasting condition, constantly declining. THERE IS NO CURE!
From 18-21 I was in and out of hospital and rehabilitation every 3-6 months. I lost function every admission.
At 22 I lost the ability to walk. Between 21-24 in the space of 3 years transitioned from using the aid of a walking stick to a four wheeled walker to manual wheelchair to electric wheelchair to electric wheelchair to being ventilator dependent.
Even though I am very head strong and independent and I feel bad asking for assistance.
In 2013 I set up a go fund me page to raise money to purchase a new wheelchair. A much needed upgrade to increase my quality of life. I was forced to embark on this endeavour of raising the money on my own due to the fact that the government refusing to assist me in any way under their disability equipment scheme at the time.
I even tried to get my story out to the media and no response.
I raised $21,500 by holding my own fundraiser, 2 silent auctions and selling my handmade cards and gifts.
In 2015 once again the government let me down by not supporting my husband who ended up having a mental/psychotic break due having to do my care 24/7. I try not to remember those days. I recall my husband passed out due to exhaustion most days. I spend my days on the phone calling up carer agencies to try and give us some assistance. No one would listen as I was not the carer. I even posted on several facebook sites for hand outs of food. As I said my husband was that exhausted neither of us were having any quality of life.
Even when my husband suffered the psychotic break did it force the government to give us the funding for the care I required – NO. They have us an ultimatum either I go into full time or within 12 months my husband would end up in a psych ward and I would be living full time in a retirement home (I have lived in one for a month with dementia suffers, NEVER AGAIN)
I moved into my current residence on the winning statement that I would be able to live as I would in my own. My husband was sold on knowing that I would be looked after and cared for.
I reside 2 hours away from my husband. I lost my customer base, all my friends and my connections.
God we were wrong. For the past 3 years I have sent my reports of neglect to several tiers of management, the disability commissioner, ombudsman with them not taking action, inability to substantiate my claims or just been swept under the rug.
2 years ago the new oh so great National Disability Insurance Scheme which was supposed to support disabled people with funding for care and equipment and fulfilling goals and achievements. I have been fighting and hitting brick walls just trying to get any thing I require to have some form of quality of life.
In the past 3 years I have suffered an eating disorder due to my house staff not even providing me with my basic care needs, I have attempted suicide twice due to the bullying, neglect, care needs not being met and the toxicity even though in my file there is no record (the care facility does not wish you to know).
My number 1 goal is to go home, to go back to living with my husband. However once again for whatever reason the government is not supporting me.
I require a ceiling hoist, bed and carers around the clock. All quotes that have been awaiting approval let alone funding from the government for over 18 months
I am losing hope that my goal of going home will ever become true.
If you are able assist me, any donation is appreciated
No donation is too small
Thanks so much for your support
Sorry for the really late update. A fundraiser is being held by my good friend Kathryn this Sat 1pm-4pm. There's a silent auction, raffle, bingo, afternoon tea and stamping of course. Please share this event https://www.facebook.com/events/1544047872348203/?ti=cl