My name is Lauren Jones. I’m an ICU nurse, a mum of 2 beautiful kids and a keen surfer. I moved down to the coast from Melbourne over 12 years ago for the amazing lifestyle that it has to offer. It was a wonderful life, and still is, but last year I found out that myself, my son and my daughter all have a disease known as Hereditary Haemorraghic Telangiectasia (HHT).
HHT is a super rare disease that impacts every individual in a different way. The disease presents as the malformation of blood vessels and leads to bleeding or blood shunting. As it develops, it can lead to abnormalities affecting the lungs, spinal cord, brain, and liver. Sometimes the effects are minimal, sometimes they are catastrophic and sometimes they are somewhere in between. Everyone is impacted differently.
Unfortunately, this disease has had a deep impact on my four-year-old daughter. She was diagnosed with the rarest version of the disease and sadly has one of these malformed blood vessels on her spine. It causes her pain every day as it presses on her nerves and may one day change her life completely. Regrettably, the location of the vessel means that it is inoperable and untreatable.
My daughter is an amazing human being. She is such a strong child to move on and live with pain most days. Despite all the pain that she endures, she is such a happy, caring and loving child.
There is no known cure for HHT so I have decided to start running to raise awareness and raise money to help try and find a cure. My goal is to get to the Gold Coast marathon in June this year. I have chosen to do this to show her that even with this disease, her and her mum can do anything that we put our minds to.
I contacted Triathlon Coach Steve Davis because he is an old friend and many, many moons ago we used to do triathlons together. I have seen how he is an inspiring leader to his athletes these days at Davey Black Triathlon. I am grateful that he’s helping me to train smart and help me to reach my goal.
I’m currently in the process of setting up my own fundraising page through the curehht.org foundation, and I will have the link ready and out on social media soon. In the meantime, feel free to check out the work they do in USA based as it so rare there is nothing official in Australia as yet.