So Who is Kaspar and why do we need to fund raise?

Kaspar is almost seven years old and lives in Melbourne, Australia with his mum and dad and two sisters. Kaspar was born with a severe disability that has no known cure - not that it was immediately apparent when he was born. It was more a slow dawning on us as he grew throughout his first year. We were happy for him to develop at his own pace (being lovingly blind parents) but by about nine months old others were beginning to strongly encourage us to see a paediatrician. So we did. And ohhh boy .... that set in motion a very scary and stressful series of events. Blood tests, urine tests, trips to the genetic counsellors and to the neurologist and an MRI. What showed up? NOTHING!

After all the tests, all the poking and prodding, all the stress on the family, no-one was any closer to being able to diagnose anything.
The best they could do was to name it "Global Developmental Delay".
Which means that all of his parts, his thinking, his senses, his hands and feet and torso won't talk to each other. So walking, talking, holding a cup, going to the toilet are nearly impossible tasks.


On the one hand this was confusing and disappointing on the other hand my mothers intuition had told me that they weren't going to find anything. I knew in my heart that Kaspar was just Kaspar, perfect in his imperfections and not to be boxed and labelled. We just had to be OK with the mystery of him and love him in every moment for what he brought to us. And he has brought us so much. As you can see by the photos he is a beautiful, engaging, happy child who loves life and finds joy in the many little things of life. He has taught us lessons in compassion and unconditional love. He has taught us to accept all people as they are and not what our expectation of them might be.

However, having said all that it has been a far from easy ride. We can be in the NOW all we like but the fact is we do need to plan for Kaspar's' future and when you have a child with a disability the future can be terrifying to the point of being utterly debilitating for those who love and care for him. Now that we have been a part of the disability universe(and it is a whole other universe) for six years now, we have heard the horror stories of older more experienced parents. And have experienced first hand the financial and emotional nightmare that it can be.

We want Kaspar's life (and our own) to be a wonderful success story...not the usual story of long term woe, exhaustion, illness and poverty that is too often the case when a family has a child with a disability. For Kaspar's life to rise above the usual picture we NEED THE SUPPORT OF OUR COMMUNITY. Some can support us financially, some will occasionally bring us a home cooked meal and some will send warm thoughts. ALL OF THIS HELPS.
This is how our global community can assist us in a very grass-roots way.

I am deeply grateful for the supports put in place by the Australian Government and the various charities and I am sharply aware of how it is in less fortunate countries. The disability system in Australia is a crisis driven system. Unless peoples lives are on the verge of collapse there is very little to prevent them from arriving there. Many times I have been told by other parents when dealing with the powers that be make sure you always cry...the squeaky wheel gets the oil. This horrible charade is widely considered acceptable practice given the situation. I hate having to do it but I DO do it because I want what is best for my child and that is how the system works. CRISIS.

Not so many years ago children like Kaspar were put into institutions for the rest of their lives. Separated from their families and the community, living a half life, locked away from those that loved them. Then came a massive change in thinking, in a nutshell...institution bad...community integration good. A VERY important attitudinal shift.... but were the resources put in place to be able to provide for the families now caring for their loved ones at home? A resounding NO!

The fund raising we are doing is for some of the basic tools of life in the western world...an appropriate bathroom and an appropriate vehicle.
Here you are witnessing the huge gap between good theory and good practice. By supporting our appeal you are keeping a child out of an institution and keeping a family together.....and we humbly thank you.

Our future vision is to create a foundation that will provide wheel chair accessible vehicles for families in need. We have a team of very talented and dedicated people ready to act on our dream and we anticipate that by this time next year we will be launching the Kaspar Foundation.

Currently there is no funding, private or government, for wheelchair accessible vehicles. There is a grant of up to $10,000 for vehicle modifications provided by the state government. Most vehicle modifications cost $22,000 - $25,000 then you have to add on the cost of the van.

Home modifications, this may include a wheelchair accessible bathroom or a ramp to access your home attract a one off grant(if you move house you can't get it again) of up to $4,400. The quote for our bathroom alone was $27,000, our ramp cost us $5,000. You do not have to be a maths genius to see that there is a massive short fall between the grants and the actual costs. For the many ordinary families on one average income like us this is a financial pressure that is sometimes impossible to bear.

Kaspar has brought us a remarkable opportunity...he has challenged us, his family, to be the ones who will find a way to support families with a similar need.