A little while ago we shared a story about a brave, determined, independent little man who suffers from cerebral palsy and epilepsy. His name is Darius (‘DJ’ to his friends!) and he is a strong little guy – you can find his original story here -> ‘Special needs – a mother’s story’
It has been a while since that story so we thought we would provide an update on our favourite little fighter. Here, his mother, Mel shares DJ’s progress:
DJ is doing great, he is now nearly 4 and is quite a cheeky little boy. He lights up our days and while some days are tough he is a very loved little man.
Since I last shared my story with The Nest family the reality of our struggles with DJ’S cerebral palsy have grown. The cerebral palsy is getting harder and harder to deal with every day. The main reason for this is because as he gets older he is getting more difficult to carry, and worse still he is harder to understand. He gets so frustrated if we can’t help or don’t understand what he wants.
We are starting to prepare him for kindergarten in 2 years time and in the last few months DJ has trialled a talking device. This device is designed to assist both him in sharing his needs with us and in return assists us to interpret what he wants. We are trialling these devices to see if they will help his communication skills and assist him to be able to make decisions for himself. Finding the right one for DJ is as ongoing trial and error process.
At the end of 2013 we made the decision for DJ to trial a powered wheelchair. While this was an exciting moment for us all it was never a decision I thought I would have to make as a parent – the conscious thought the my child will need a wheelchair probably for the rest of his life is scary and upsetting. Knowing that your child may never walk is something you never want to think about – but this is where we find ourselves now.
So, we trialled the wheelchair knowing it will give him the independent life that he needs and to help him to keep up with his friends.
We knew we had to try and give DJ the best opportunities we could but we were surprised and alarmed once we realised the costs associated with providing our little man with this kind of independent freedom.
While we will be able to receive some funding from the government to assist little DJ in getting his chair we need to upgrade our family car so the chair will fit! This is because his wheelchair will become his seat in the car. Once we were told this, we started researching cars and discovered that the basic modifications needed to a car would mean a new car would cost us anywhere between $50,000.00 to $80,000.00. The funding only goes towards $10,000.00 for the modifications and the conversion alone costs up to $40,000.00.
This is a expense we never thought we would have to budget for, but we have to find the money to help him.
We recently recieved a phone call from a very generous local organisation who were selling their already converted car and they had heard our story and wanted to offer it to us first. It meet all our needs as it had enough room to transport DJ’s sister Yazmin as well. Plus it had an electric lift and ramp to get the wheelchair in and out which would save me from trying to lift it all the time.
So, like any normal family we went to the bank assuming we could get a loan. Then heartbreak struck. Due to our family’s financial expenses and relying on only my husband’s income they wouldn’t give us a loan. We were so upset – our perfect car and we couldn’t afford to get it. I was so distraught. Here was the perfect opportunity to give my little man a chance at freedom and it was slowly slipping away from us.
One of my friends suggested that we should try and fundraise the money to get the car. It was not something I had really thought about before and was a hard decision, to actually ask people for help. What is sad it that we also received quite a few negative comments about trying to fundraise this money. I don’t understand why people can’t just see that we are trying to help give our little boy some independence for his future. We need to be able to take him to all his weekly appointments between Orange, Bathurst and Sydney.
I opened a page on Go-Fund-Me which you can find here -> Go-Fund-Me-Darius and we would really love some more support. Most of the community has been overwhelming in their support for our boy and while we are getting closer everyday to our target we really need some more support.
Nesters if you can help this gorgeous little man, even just a little, then please get to the Go-Fund-Me-Darius site and make a donation. Please help this mum and dad find their son’s independence.