· Well where to start, i was born on the 20th of February in 1975 and at my birth there was something visibly wrong with me. My legs were large and my feet very large and deformed (for want of a better word to use).It wasn't until a few weeks later that i was actually allowed home with my parents as the doctors did not know if i would live or die, but hey I'm still here at 39 having fun!
· On reaching school age i attended a special school being there we all had physical problems so we knew that we had limitations, but we accepted that.
· On reaching 14 i was enrolled part-time in a comprehensive school to do my GCSE's came away with 4 GCSE's.
· After school i started college to do an Art course and more GCSE's. I made good friends and along with studying enjoyed some weekends away with plenty of booze and drunken nights.
· After leaving college i went to study a degree in Graphic Design away from home. However I had mobility difficulties and didn't find it easy so deferred my course and came home to have an operation to reduce the weight of my legs.
· Soon after i wanted my independence and found my own home and lived it up by spending weekends drinking and dancing the night away!
· At the same time i did courses in Sociology, Psychology and Criminology.
· I then went on to do a degree in Psychology, a long 3 years, but enjoyable and I met some lovely people and one person, Amanda, who is now one of my best friends.
· After taking a quiet year of study and doing a course in Sign Language, i followed that with a desire to be a counsellor. 3 long years of the course lay ahead.
· However, 2 years into it i suffered a Deep Vein Thrombosis (DVT) and was paralysed for 6 weeks. Once the feeling returned I had to learn to walk again, which i did and got back on the counselling course and caught up with the work.
· During my counselling course i did lots of voluntary work in various fields, and found that it gave me a lot of confidence.
· Living on my own and looking for some type of work i've spent lots of time on the internet and have met some lovely people. One person, who is now a best friend, is Sue she has been there for me when ive needed someone, especially after my long stay in hospital.
· Then again, after another short course in mediation, i was admitted to hospital this time for 5 months. Developing blood infections, kidney and stomach problems, urine infections, severe anemia, and MRSA and foot drop. Again i had to learn to walk, it took a while but i'm at least now back to myself, walking is a little harder but it won't stop me!
& 2005 what a change:
· The beginning of the year (2006) i was still getting back on my feet, walking was slowly getting easier.
· At the same time i was in touch with Tracey Whitewood-Neal, founder of the Proteus Syndrome Foundation UK (PSF UK) who put me in touch with the top doctor in the world who knows as much as there is to know about PS.
· Following a consultation with him in May i was finally told that i possibly do have Proteus Syndrome. It wasn't a definite diagnosis, but its the nearest i have ever to come to knowing.
· After the help i received from the PSF i wanted to give something back and do some fundraising, so after a few weeks of organising the £ for PSF Day was born.
· So after this the media wheel started to turn and the rest as they say is history. See media appearances section for how life changed in 2006/7 and beyond.
So after all the media coverage I have had, 2010 brought a year of big change, after living with infection after infection for up to 12 years, my ulcer on my left foot developed blood poisoning. This meant that it had to be amputated or it would have killed me.
I was very ill at the time and it took 6 months for me to be discharged from hospital and then I had to start all over again to gain my independence and get my life back on track. It is now 2012 and I am still on the road of recovery, but I have belief in myself that one day I will achieve what I need to have a full and independent life.
Here we are in 2014:
So here we are in 2014 & I am still striving for independence and I will get there, I am due to get a new vehicle soon that will mean I can drive from my wheelchair. This will make a huge difference to my life and will mean that I can actually leave my home on my own for the first time in 4 and half years! I still need a new wheelchair that I can get in and out of without hurting myself, but that will hopefully be in the pipeline soon, so watch this space for pics of me whizzing around in my WAV (wheelchair Accessible Vehicle)
So here he is, Walter, my new Wheelchair Accessible vehicle. There have been a few ups and downs since we met, mainly due to problems with the adaptations, but he is certainly making my life easier.
So here we are at the end of 2016, I have spent the last year and a half designing, creating and setting up a support group called GoPI3Ks. This is for people with a mutation in the PIK overgrowth gene.
Facebook page: https://www.facebook.com/groups/Gopi3ks/
GOPI3KS THE CHARITY
With more and more people being diagnosed with a PIK gene mutation, we decided that as well as providing psychological support, we also wanted to be able to financially help those living with this overgrowth condition. Our aim is to help by providing funding for equipment, aids and those things which will help make a persons’ life more independent and fulfilling.
We are currently fundraising to reach the target of £5,000. Once we reach this we will be able to become a registered charity and we can then start helping where it is needed the most.
See our home page for more details on how to donate.