The story of Sara
My name is Sara Violante and HHT runs through my mothers side of the family as we discovered 10 years ago. I am the eldest of 5 children and after my mum discovered she had HHT we have all had a genetic test to see if we had it. My brother Matthew was the second child, and my siter Alicia the youngest child, tested positive to the mutant gene.
We all believed that this HHT wouldnt impact our lives as much as nanna lived quite comfortably until she was in her early 60s before she started having major complications as she had AVMs in her brain. My mother hasnt had any major complications as she has also lived quite normally bar nosebleeds, migranes and occasional numbness.
Well let me tell you not impacting our lives was an understatement, on August 10th 2011 we lost my brother Matthew at age 26, due to heamorrhage in his lungs due to HHT. Matt was born with AVMS in his lungs and had a few other operations where coils were put in his lungs to stop pressure building up and an artery bursting. When he was young the doctors diagnosed him with asthma and sent him away with ventolin.
I did not believe that Mattys condition was life threatening and in a matter of about 10 months my life was completely turned upside down from this horrible disease. If doctors were more aware of this condition and understood what was happening to Matt things would of been very different. We need to raise awareness and find a cure.
Mattys soldiers has been raising funds for the Royal Melbourne Hospital genetics clinic to be used for HHT research since september 2011 and have raised approximately $40 000 . The city to bay was our first fundraiser with 120 entrants in our group and approximately 200 people attened a bbq at Partidge House Glenelg.We are planning this years city to bay.