The Long Road

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Obviously somewhere along the line, my mum thought there was something not quite right with my left and as it had big lumps growing from the base of my left ring finer and little finger. I was originally diagnosed with Olliers disease in 1967 in Victoria, Australia. My journey from that point was arduous. Not a lot (make that minute) was known about Olliers disease and I was taken from one doctor to another over a period of 7 years, I had specialists who wanted to cut open up all of fingers so he could have a look! Another wanted to put my into the Royal Children's in Melbourne for 2 weeks in and 2 weeks out for over 2 years so he could watch it grow and others who just wanted to x-ray the hell out of me.

One of my sadest memories was in late 1974 when my mother took me to another Orthopaedic surgeon who told my mother that it was cancer and needed to amputate my left ring finger as soon as possible to "stem the growth", as he put it. As a very young 13 year old, this was heart breaking. My finger was amputated in January, 1975 and being left handed, made my journey even harder learning how to do simple things again. As we left the hospital after a 10 day stay, the surgeon told my mother and myself that if the amputation didn't stem the growth of the cancer within 12 months, he was going to remove my entire hand!!! I would never walk into his office again.

My biggest achievement that year was learning to touch type in high school and adapting without my finger. I continued to learn new things. I learned how to play squash, tennis and table tennis. All that with a weakened left hand. I joined the Volleyball squad in high school and also travelled with the regional squad. Bones were weakened to the point I would break them playing tennis!

In my late teens, I was also diagnosed with type 1 diabetes at the age of 17. I thought, what else can I get?? Back into hospital with a new skill to learn - how to manage diabetes along with learning to inject myself. Practising on an orange just doesn't cut it.

I started to develop blueish coloured lumps on my hand, wrist and even at one stage, my breast in my late 30's. As they grew, they became incredibly painful and disruptive, so I found a general surgeon and asked him remove all these lumps. That was in 2004. After that surgery the assistant surgeon contacted me and advised that I didn't have Olliers disease at all, but Maffucci Syndrome which is defined by multiple enchondromas as well as haemangiomas. Great!! I just become even more special.

I have had a few more surgeries since 2004 to remove the haemangiomas for aesthetic reasons. I have only just discovered in the last few months that the bones in my left arm have bowed and my left arm is now 4 cms shorter than my right arm!

I am currently under the supervision on a Reconstructive surgeon in Sydney, NSW and am awaiting to get an appointment with a geneticist to do a test to look for markers towards potential future problems, primarily, Ovarian Cancer, Pancreatic cancer and brain tumours.

Life right now is almost perfect at 57 years old. My beautiful husband of 2 years is my life. My great 2 children and my gorgeous little grandbaby, Audrey, keep me grounded. Just need to keep an eye on everything. It has turned into a 'watch and act' moment now. Hopefully nothing will change, just like the last 51 years or so.

Thanks for reading.

Kelly.