Hi! My name is Amelia and I’m 23 years old, but my battle with cancer started 15 years ago. My family’s story is pretty crazy. I’ll start from the beginning…

"My grandmother passed away at the age of just 34"

My mum was only 13. At the time mum was told she had passed away from a brain tumour, and she was known to have kidney cancer and spinal tumours.

When my older sister Melinda was 19 she was at the beach and suddenly got a shooting pain in her eye. She went straight to the GP who was shocked when he was unable to look behind her eye due to the severe haemorrhaging.

She was sent to the local ophthalmologist (in Coffs Harbour) who said that she had haemangiomas on her retina. Melinda, mum and dad then went to Sydney to see a specialist who took a family history, where my mum discussed losing her vision when I was a baby in one of her eyes.

"Our doctor, who is a brilliant man, pieced the puzzles together"

He believed that our family had a rare condition called Von Hippel-Lindau, which causes various tumours, cysts and cancers throughout the body.

Given that each child from a person who has VHL has a 50/50 chance of inheriting the condition, my younger sister and I were sent for CT scans, MRI’s and eye checkups.

"This revealed that yes, I had this scary and unknown disease"

Being 8 years old and knowing only that my older sister was losing her sight, and my grandmother had died from this, I was terrified but didn’t know how to express it.

Within months I was admitted to Westmead children’s hospital to have ganglioneuroma the size of a grapefruit removed from my right adrenal gland.

"I didn’t really understand what was going on, but I knew it was bad when I would catch mum and dad crying"

I was in hospital for around 6 months before I actually had the surgery, and this was more like a holiday. The Starlight room, heaps of presents and making heaps of new friends... plus hospital school was so much more fun than my school back home!

At this time we all just hoped and prayed that my younger sister Greta would be free from VHL. Four years later, when Greta was 8, the nightmare began for her - her first haemangioma. I felt like my heart was shattering.

"The thought of my baby sister having to be in pain was so much harder than actually going through the surgeries myself"

We all had genetic testing done and it only confirmed what we already knew. My mum, Melinda, Greta and myself all had Von Hippel-Lindau. My older sister, Melinda, definitely had the hardest run.

She lost both her kidneys due to renal cell carcinoma so she was on haemodialysis for 6 long years. Unfortunately she lost all of her vision due to the severity of the hemangiomas on her retinas and she was given a beautiful guide dog named Aimee!

Melinda had spinal surgery to remove tumours on her spine, she had several heart attacks due to her high blood pressure and also had cancer on her pancreas.

"Sadly on the 14th of June 2009, Melinda passed away"

After reading about how much she had undergone a lot of people may not realise how much of a shock this still was for our family. Melinda fought so hard and never complained about feeling sick or being in pain as she didn’t want to frighten us.

We had no idea how much she was really suffering and we were not prepared to face a future without her. Melinda will always be my inspiration to fight and live life to the fullest because she did until the very end.

"I will never use the phrase 'lost her battle to cancer' because she didn't, her body just couldn’t keep up anymore"

My younger sister Greta has had many surgeries on her eyes for hemangiomas. In January 2009 she had surgery to remove a very large tumour from inside her spinal cord.

The tumour was so large it had actually burst through the cord, so the surgery was very dangerous and we were all warned of the possibility of Greta not being able to walk again.

"Thankfully Greta recovered well"

With the help of intense physio and occupational therapy, she can now walk and has almost full sensation back in her legs. Greta has a small benign tumour on her cerebellum but they are just monitoring its growth for now.

She recently joined CanTeen and moved to Brisbane and (besides the VHL) she is a very healthy, active and beautiful person!

"My mum, given that she was 42 when we found out about the disease, is very lucky"

As I mentioned earlier she has lost the vision in one eye, but the other is doing well. She has had renal cell carcinoma and part of one of her kidneys removed and a huge 20cm ovarian tumour removed 2 years ago. Mum is pretty unlucky in another way though, as she was also diagnosed with melanoma.

"The hardest thing with mum is getting her to look after herself and stop worrying about us!"

She is my idol and my inspiration and I will be eternally grateful to my mum for allowing our family to still have such a positive outlook on life.

Me? Well after that adrenal gland surgery when I was 8 my right kidney stopped working. I then developed renal cell carcinoma in my left kidney.

"I found this out within a month of finding out that I was pregnant"

I went through the biggest emotional roller coaster you can imagine but I got myself together and just knew that I could do it. With my doctor's okay, I had a relatively smooth pregnancy and on the 8th of August 2006, I had a beautiful baby boy called Xavier.

He was healthy and a very good baby. It was 6 months after his birth I had my surgery to remove 10 tumours from my only functioning kidney. I recently had surgery to remove the rest of that kidney as the cancer became recurrent.

I am recovering well and now haemodialysis dependent. I go to the PA hospital 3 times a week for 5 hours at a time, so I now have a portable DVD player and am watching lots of movies! Given what has happened with Melinda, this is a very daunting experience.

"I just have to have faith in my doctors and stay positive, especially for Xavier"

I am hopeful that I will be able to be trained on home dialysis and fingers crossed for a kidney transplant.

I have had, just like my sisters and mum, many hemangiomas on my retinas but my eyes are still seeing well. I also have a few small tumours on the base of my brain but they are benign and not really doing anything at the moment.

"My son Xavier has a 50/50 chance of inheriting this disease"

I hope he doesn’t of course but I believe even if he does he can lead as good a life as anybody else.

People often ask “How is your dad?”. My dad is our family rock as is my husband Isaac. They are so supportive and never seem to let anything get on top of them. So while my family has had a very hard 14 years in one way, we are so lucky in many more.

One of the hardest parts of our condition though, is that we don’t have a remission. The tumours just keep coming, and we just have to find them early enough.

"Somehow everyone just seems to get on with life because this is our 'normal'"

I have one year to go in my bachelor of nursing. You’d think I would be sick of hospitals by now, but I am so excited to be able to be there for people the way the doctors and nurses have supported our family.