Hi, thanks for stopping by and for taking the time out to read about me and my life.
I’m Jodie and mummy to two happy little monkeys, Eddie and Livvy, and wife to my husband Phillip. We live in Nottinghamshire, England. I see ourselves as a normal family. However our perfect world fell apart on Friday 13th June 2014. That day still resonates pain and a feeling of grief when I look back. It was the day we found out our baby girl who was 4 years old at the time had skin cancer. The days and weeks that followed were long and dark.
Doing the school run, karate and swimming lessons whilst trying to find time to walk our dog and keep a tidy house were what I was all about before that day and slowly over time that’s where we are once again. We have always been happy and content. With our family complete, we started to sit back and to enjoy watching our children grow and become the greatest that they possibly can, soaking up all the world has to offer us and our children. Everything was going well until that Friday morning.
I wouldn’t have got here today without the help of a fantastic medical team both locally here in Nottinghamshire and at St Thomas hospital in London. After lots of phone calls between the two hospitals and a blood test we arrived at the diagnoses of Xeroderma Pigmentosum or XP. An extremely rare genetic condition which means the consequences of exposure to ultra violet radiation in sunlight and artificial lights will result in skin cancers. It still amazes me that only around 100 people in the UK have XP, it’s mind blowing that we are one of those 100 families dealing with this extraordinary condition.
It’s taken a long time to get here, a place where living with XP is our new normal. I felt that by sharing my experiences with others would help me to understand and come to terms with our new world and hopefully others who get diagnosed with not only XP but any life changing condition.
There is light at the end of the tunnel (hopefully lit by a safe LED bulb) it takes adjustments but you too can move on, as I have. I hope you enjoy sharing our new life and follow us as we continue in our transformation, living in the brightest shadows.
3 thoughts on “About”
Hi Jodie, You have taken all the thoughts in my head and put them down so eloquently in writing!! My son, Adam, was clinically diagnosed with XP exactly on his third birthday, in November of 2013. If I calculate correctly, he and you daughter must be very close in age. I often search online for new research in the area of XP and just came across your blog. Thank you so much for putting Livvy and your family’s experiences out there, as your writing provides such relatable and vivid insight into the unique lives of these kiddos!
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Hi Jen, I’m so glad you found my blog, I too spent hours looking for info online about XP and still do.
Livvy is now six and her birthday is in July so yes her and Adam must be close in age.
My aim when starting the blog was to help me to come to terms with our new world, it fills me with pride knowing its reached other families living as we do. I hope you continue to read about us and take strength from knowing you are not alone.
How is Olivia getting on now? I hope all well