Firstly, thank you to all who kindly donated in 2013, to help raise over $30k towards TSC Research at the Royal Childrens Hospital Melbourne.
Kristian has now undergone 6 marathon brain surgeries and thanks to the hard work of his brilliant medical teams, at the Royal Childrens Hospital Melbourne, he is now achieving some things, we never thought possible. . .
There was a time when we didn't know if Kristian would ever crawl, walk or talk. Now he is slowly doing all of these things and MANY more, gradually building upon these key milestones.
We have shifted from a mindset of CAN'T, to CAN and are very much focused on what Kristian CAN DO.
Kristian CAN now:
- Say almost 40-50 words
- Walk, Run and Climb
- Sing & Dance
- Whistle and click his fingers
Whilst he still has some massive challenges ahead, it's these little things, that make such a BIG difference to both his and our lives...
What makes it so hard?
Kristian has a rare genetic condition called Tuberous Sclerosis ... and there IS NO CURE...
Tuberous Sclerosis Complex is a rare genetic disorder that affects 1 in 6,000 people world wide.
Kristian is missing one gene that you and I ordinarily have within our genetic make up, which has the role of suppressing the growth of tumours.
Kristian was diagnosed with the disorder at the age of just 7 weeks old, when he started to have seizures... these seizures are caused by the growth of tubers (benign tumours) in his brain. He still battles with seizures, every single day, some of which result in a medical emergency and a trip to hospital via ambulance and sometimes an extended stay...
There are a large number of complications that individuals with the disorder can be affected with and the degree of severity varies, some of these are:
Brain : Epilepsy and benign brain tumours called tubers, the combination of both leading to the potential of mild, to severe developmental delay. Tumours called SEGAS, which can grow and potentially block the flow of spinal fluid, in the ventricles of the brain, leading to a condition called Hydrocephalus.
Heart : Babies can have heart lesions, by adulthood these disappear
Lungs : Lung growths that can bleed and cause long term complications
Kidneys : Cyst growths and even the potential for some, to have kidney failure requiring a transplant
Eyes : in rare cases tubers can affect vision
Skin : lesions appearing as red facial rash, white patches known as 'ash leaf' patches and other manifestations
The Royal Childrens Hospital in Melbourne have been conducting research for a number of years, into establishing the cause of the disease, as well as starting to develop advanced treatments, to address the symptoms.
Kristian is just one of many people across the globe, who would benefit from new treatments. We all appreciate greatly whatever you can do, to raise awareness of this disorder and support the cause!
We pledge to "give EVERYTHING, but UP!"... It may be a 'Long Road....' but 'HOPE' is all we've got!