Wheelchair accessible vehicle for Princess Maddy

URGENT PLEASE SHARE!!!!

Hi, my name is Sandy and I am Maddy’s Mum. 

Our beautiful Maddy was born premature at 26 weeks weighing just 960grams. 

She spent 155 days in the John hunter hospital NICU.

Sadly as a complication from being born 14 weeks early Maddy suffered a grade 4 bleed on the brain along with many other major complications. 

At two weeks old Maddy also suffered from a bowel perforation. 

She needed life-saving surgery when her weight had dropped to just 700grams at the time.

They told us that Maddy wouldn’t make it and we had her baptised. 

But somehow by nothing short of a miracle Maddy pulled through, it was one of the most gutwrenching times in our life.

 (After many months Maddy had her bowel rejoined and was able to recover from this life-threatening disease called necrotising enterocolitis.)

Maddy also suffered retinopathy of prematurity which is a severe condition that affects the eyes and can cause blindness.

Very sadly whilst they were busy saving Maddy’s life from her perforated bowel she had suffered a grade 4 hemorrhage in her brain.

As a result of this traumatic bleed on the brain it caused hydrocephalus which is a buildup of CSF spinal fluid on the brain. 

Then Maddy had to have life-saving surgery to release the pressure on her brain. 

Once she got to a certain weight (which was a few kilos) they tried putting in what is called a shunt in her brain to relieve the pressure. 

Sadly this was not successful every time they tried this surgery it failed and usually caused her meningitis. 

Day’s, weeks and months passed and they continued to operate time after time on her brain. It was relentless and never-ending.

When they sent Maddy home after six months at the hospital they told us to take her home and enjoy what time she had left. 

The Drs gave us a very grim outlook. 

They told us Maddy would be blind, deaf and be in a vegetive state. She wouldn’t talk, eat, swallow etc, she would do NOTHING!.. 

They gave us the worst possible outlook. 

I remember the words as clear as day “she won’t have any kind of a life, it’s going to be a very grim and sad life for her and you”.

I thought I would go home and lose my baby girl. 

But Maddy had different ideas. 

She was a fighter. 

She fought from day one, time and time again she kept proving them wrong and showing them miracles do happen!

As time went on we learnt that Maddy developed Cerebral Palsy as a result of her complications. 

It was just another thing they were throwing at us..

I said it doesn’t matter, she’s a fighter!

Maddy’s already shown us that she is strong! 

She has shown us that she can overcome anything! 

Absolutely nothing will stop her! NOTHING!!

After hundreds of operations on her brain and years of hospital visits Maddy has proven all her doctors she is nothing short of a miracle.

THEY WERE AMAZED!

But Maddy has faced endless challenges during her 19 years of life. 

Extensive stomach surgery, Brain surgery, hip surgery and continual pain in her legs due to her muscles being affected from spasticity. 

Maddy has seizures and is also classed as legally blind. 

She has lots of complex adrenal issues which are life threatening and constantly needs monitoring all day and night and can change at any moment. 

The list goes on and honestly I’ve never known anyone as brave and resilient as Maddy. 

All these things are a challenge for Maddy and it can be hard at times for us too.

We just want to make sure she is getting the best care possible. 

She has never complained and always been the happiest social girl we know and love.

Maddy is an absolute shining light in everyone’s life that she crosses. 

It’s impossible not to fall in love with her she is absolutely infectious!

Maddy’s highlight has been school for the past 13 years. 

She just adores school! 

And of course in true Maddy style she has shown nothing but determination and has always tried her hardest at everything she puts her mind too!

Now comes the next phase of her life now she is graduating year 12. 

Goodness how scary this is for her leaving the place and people she loves so dearly. 

It’s going to be a hard transition for her, the biggest one yet! 

But we want to make it as easy as possible for her and that’s where we are asking for your help..

We are currently looking for where she will go to day to day for group activities and maybe some employment if she wishes with a full time support worker. 

Because Maddy has lots of complex medical needs she will always need a full time carer.

To access her new services she will need a wheelchair accessible vehicle for her powered wheelchair. 

This vehicle will need a ramp that opens out from the back of the car. 

Then we can drive maddys powerchair safely into the back of the vehicle where we will attach anchor points to the front and back of her chair so it locks securely into place for the trip ahead. 

Maddy has always used her manual wheelchair until recently the NDIS funded an amazing electric wheelchair. 

This has been a lifesaver for Maddy as she fatigues very quickly due to her cerebral palsy and chronic health conditions.

So now we need a vehicle to take this amazing electric wheelchair on the road with us. 

Sadly the NDIS will only fund the wheelchair modifications on a vehicle but will NOT pay for the car!!! 

It’s so very disappointing for us and so many other families!

The NDIS requires the car that is to be modified to be less than 5 yrs old. 

For example one of the few types of cars that are approved for wheelchair modifications here in Australia is the KIA CARNIVAL. 

These cars are around $65,000 new to buy and then the wheelchair modifications to the car are $45,000.

This process is also around 12 months to have the modifications completed by the approved company on a new car. 

The other option is to purchase a second hand vehicle that has already previously had the modifications done to it.

These vehicles are anywhere up to 10-15 yrs old and cost around $30,000. 

In an ideal world a new vehicle would be a dream to have for many years to come but the reality is that’s out of reach. 

Sadly we can’t continue to lift Maddy and the manual wheelchair into our old car forever. 

I constantly suffer chronic back pain and need spine surgery, so it’s getting very tough for me to

continue lifting Maddy and her manual wheelchair in our car. 

As Maddy ‘s mum and full-time carer I have never asked anyone for help. 

I have looked after Maddy as a mum always does but I’ve also been the role of a full-time carer. It’s hard, I won’t sugar coat it. 

There’s days when I think will things get easier for Maddy? 

When will life just give her a bloody break? 

Why can’t I take away the pain she suffers everyday and the heartache (she hides well) of not being able to do all the things that other people do? 

It’s just heartbreaking. 

But Maddy never complains about anything EVER!

As Maddy’s carer I have never asked anyone for help. 

I have looked after Maddy and I have done everything for her that she has ever needed with the help of her dad when he’s not at work. 

I’m not the only one that has tough days. 

So does Maddys Dad. 

He has had the responsibility of being the sole provider for all of us for 19 years.

He has taken amazing care of his family and never complains.

Maddy’s dad is a very proud man and won’t ask anyone for help but he is always the first to help others. 

He is an amazing dad to Maddy and she just adores him. 

We just want Maddy to have amazing opportunities and experiences like everyone else.

Maddy will be able to access so much more in her life if she can travel in her electric wheelchair safely in a car modified for her needs.

Thankyou from the bottom of our hearts for wanting to be a part of Maddy’s brave, inspirational and courageous story!