MEDIA RELEASE – ALYSIA’S WISH
Let me tell you about my dear friend Alysia Kaiser, better known as Liss/Lissie to her friends.
I’m sure you have you heard of Muscular Dystrophy, but do you know what it is?
Alysia has a rare form of Muscular Dystrophy, which is a genetic, progressive muscle-wasting condition. The most common form of Muscular Dystrophy affects 1 in every 3,500 males and 1 in every 50,000 females. This disease effects every muscle in the body including the heart. Alysia's body is unable to produce dystrophin which is an essential protein for the repair and stability of muscle fibres.
AND THERE IS NO CURE!
Alysia’s parents tried to stress to several specialists from a young age that Alysia was different but she was not diagnosed with this terrible disease until she was around 16 years old. Her condition has progressively gotten worse to the stage where from a bright, active young person, she is now wheelchair bound, ventilator dependent and requires 24/7 care.
Alysia is an intelligent, witty, creative 30 year old who is trapped in a body that is gradually losing all physical function and she currently resides in a 24/7 care facility in Thornbury, the only accommodation that supports her specific care needs especially being ventilator dependent. It was the only place of its kind available in Australia.
Specialists in the MD field have told Alysia time and again that they do not know how or why she is still alive, as most cases they have seen with her vast amount of symptoms do not live past the age of 18. Even last year Alysia respiratory arrested, and it took staff at the Austin 2 hours to revive her. Alysia lost 2 hours of her life and doctors do not know how she survived.
When Alysia moved to the facility at Thornbury 2 years ago, she moved 2 hours away from her family and friends on the Mornington Peninsula where she had been living with her husband in Rosebud.
Alysia left behind a life that she loved, spending time with family and friends, her business 'Handmade by Alysia ' where she had an established clientele and market stalls locally every fortnight.
It has been very hard for her to adjust due to the change in circumstances and location. Her husband used to visit her quite often. However recently they separated as her ever changing condition and the long commute from Rosebud to Thornbury and back has taken a toll.
About a year ago, with encouragement from family and friends, they had booked a 12 night New Zealand cruise for this coming February, which was to have been a lovely holiday for the 2 of them.
Friends have since persuaded Alysia to keep the booking as she hasn’t had a proper holiday since she was 8 years old, and with the assistance of the travel agency, Alysia has been assured she can go on the cruise with one of her delightful carer’s Jacqui.
However, paying for the cruise and her carer to attend with her is another consideration altogether.
Recently Alysia had to pay $1,200 out of pocket for repairs to her specialized wheelchair, which was not covered by the NDIS. Due to Alysia's current condition she also has had to attend several specialist appointments, which are also not being covered by NDIS. She has to constantly make sure that there is enough money left over from her pension to pay for those, and any unexpected maintenance on her ventilator (life & death) and wheelchair accessible car too.
Some weeks, after paying for rent, bills, medical expenses and petrol, Alysia wonders how she is even going to buy such basics as groceries, let alone keep up the payments for the one and only holiday of a lifetime which she so deserves and should be able to enjoy stress-free.
The home which Alysia has moved to, while providing basic needs, such as a roof over her head, has taken Alysia away from her support network of friends and family, and has stifled her desire to remain independent and creative as she tries to fit into already established household routines and patterns with people who seem to have lost the desire to maintain any sort of quality of life.
This is where we can step in and help – help to make Alysia feel loved and cared for, help her to still enjoy her cardmaking and stamping with creative friends and help her to go on the holiday of a lifetime – it is quite probably the only one she will ever have.
Alysia hates asking for help, and I know she also feels guilty about having used some of her pension money already for the deposit on the trip – she feels that any pension money left-over each week should be saved for ventilator, wheelchair and vehicle maintenance, not for something so luxurious and outlandish as a cruise.
Despite living with her MD diagnosis for 15 years, she has only sought out fundraising assistance once before – and that was to purchase her current specialized wheelchair, as it wasn’t covered by government assistance in any way. Alysia does not like to have to ask for assistance and was hoping that the when the NDIS was rolled out that all/most of her financial worries would be reduced. But 8 months into the new disability scheme that is not the case and I know she is really fretting about keeping up the payments for her dream holiday.
A Go-Fund-Me page has been set up to help Alysia maintain some quality of life and to have something really special to look forward to in a few months. The goal of this page will be to pay for Alysia’s Wish – her dream holiday, a 12 night cruise to New Zealand with her carer, where she can forget about the stifling home she lives in, enjoy the fresh air and the ocean, see sights she never dreamed of seeing, go to the movies and the shows on the cruise. It will be like nothing she has ever done before.
In conjunction with this we will be holding a big fundraising event – involving cardmaking and stamping – one of Alysia’s other passions that gives her a reason to keep going. This event will be on December the 2nd at Eltham Senior Citizens and will involve a Silent Auction, Stamping Bingo, cardmaking time, afternoon tea and door prizes. As well as an opportunity to purchase Alysia's handmade cards, candles and gifts.
Not everyone will be able to attend that event, and this is where the Go Fund Me Page steps in. Any donations, no matter how small, towards this appeal will be so greatly appreciated.
If you’d like to be involved in the cardmaking afternoon fundraiser, please contact Kathryn 0418361931 or firstname.lastname@example.org but if you can’t attend, please help Alysia with any amount you can possibly spare to make her wish come true.
Please help Alysia if you can!
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