I have one wish to return to my life to live with my husband in Rosebud to be closer to friends and friends. However to make this happen I require your assistance to fund the medical equipment required to be able to go home - a ceiling hoist, a hospital bed and around the clock carers.
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 2015 my husband suffered a psychotic break due to being forced to do my care full time due to the government not wishing to assist us in any way of form. After his breakdown we were told that if we kept going that within 6 months that my husband will end up in a psych ward and I would end up in a nursing home (I have lived in a nursing home and its not somewhere where a 31 should have to reside).
I left behind my growing business, my husband, my family and friends.
I now reside 2 hours away from my husband, family and friends. Even though this is a one of a kind facility the only one in Victoria let alone in Australia due to it providing specialised care with ventilators, full time care and a nurse on site. However I can tell you that conditions are not up to scratch. I have residents who chose to cause me trouble due to personality clashes, staff who do not attend to my needs and have favorites.
I have attempted suicide twice due to the conditions of this place, the negative vibes and the constant discouragement of my crafting, baking and socialising or anything that gives me a quality of life.
I only moved where I currently reside as a temporary measure knowing that the NDIS would be rolling out within 3 months of moving here. I did several hours of preparation towards knowing the ins and outs of the NDIS so I could get my plan right and get the right supports for me etc. However even with all the preparation and documentation that I bought to the planning meeting, nothing was taken into consideration and the plan was inadequate for my needs. There was nothing implemented towards my goals of going home or even to maintaining my condition.
It has now been 3 years 6 plans and still I am no further in gaining the equipment that I need to go home, I am still losing function, and in constant pain plus losing hope as the days go by.
I have been featured in the Age and also on channel 10s the Project as my family with my advocate taking the right avenues to get things amended or put straight became futile and had no positive result.
Update: Have been approached by the NDIS with a new plan, however it still does not accommodate my needs and its not getting me any further towards my goal of going home.
I have been married 6 years now and in that time Mathew has never been my husband. I just want to feel like a married couple. I want to be able to live some form of quality of life.
The government is keeping us apart. They are breaching all for what it stands for and how they are supposed to be supporting and assisting people like me who suffer from a disability.
You can also purchase my handmade cards and gifts: www.facebook.com/handmadebyalysia
Please if you can help it would be greatly appreciated.
Any donation is greatly appreciated. No donation is too small
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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