My story by Jodi

I was 6 years old and sitting in the bath playing with small toys, when I looked down at my skin and stared at the big brown, hairy, lumpy birthmark that covered all my back, wrapped around onto my tummy and continued down past my bottom onto the top of my thigh.  As I stared at my skin, I wondered why I had been born with such a big birthmark and with lots of smaller birthmarks too.  I wondered why God would allow me to be so different to my sisters and all my friends.  Did God make a mistake?  So as I sat in the bath, I put my hands together and closed my eyes and prayed…. “Lord Jesus, I’m not too sure why I was born with my big brown birthmark, but I know you are real and you do hear and answer prayers… and I know you love me… so please, when I open my eyes, let my birthmark be gone! Amen.”  I sat for a short while with my eyes closed, just to give God enough time to sort out my request.  After a minute or two, I opened one eye very slowly and then my second eye.  I peered down at my tummy and to my amazement the big hairy birthmark was still there!  It hadn’t even shrunk a little bit!  I couldn’t believe it – why had God said “No” to my prayer request?  Well, 29 years on from sitting in that bath, I can tell you that I know exactly why God said “No” to my little request!  As I look back over my life, I can wholeheartedly say that I am totally blessed to have been born with my big brown hairy birthmark.  Let me explain why…

My story by JodiOn the 6th September 1980 I was born with a large birthmark covering 80% of my body.  The midwives and doctor who delivered me into this world had never seen anything like my skin before and so my parents were given no answers about the condition. I was sent home with a big bag of dressings as the skin on my back was very delicate and my birthmark bled immediately after birth for a number of weeks. From that moment on, my parents had to muddle through my early childhood days, guessing how to look after their first baby and her delicate skin.

Throughout the first 15 years of my life, I underwent 30+ surgical operations to remove my large birthmark and some of the smaller marks.  All the attempts to remove my large birthmark were unsuccessful.  Alder Hey Children’s Hospital became my second home and I even had my very own bed, which I stayed in each time I was admitted.  The best memory from my hospital stays is Dad rearing up the wheelchair and pushing me fast down the long sloping corridors.  It was great fun, but probably not advisable then… or now!

School life was difficult because I had missed nearly 3 years of my education due to the amount of time spent in hospital.  I always struggled to keep up with the rest of my class friends, but this only led to a determination which enabled me to strive for my best!  So much so, that I managed to ‘just’ gain enough GCSE grades to continue into further education – that was a miracle!

Do you believe in miracles?  I do!  At the age of 16, a family friend received a Scottish newspaper through her front door in Liverpool and had no idea how or why?!  In the newspaper there was a story about a little baby boy in Glasgow who had just been born with the same condition as me!  Through the newspaper article, my parents discovered a doctor at Great Ormond Street Hospital in London who had just started researching this condition!  Can you imagine my parents’ reaction to this news? After 16 years of not even knowing the name of their daughter’s condition, there was now a doctor who not only knew the name of the condition but wanted to research it!  This was amazing and overwhelming all rolled into one!  My parents took me to meet the wonderful Dr. Atherton at Great Ormond Street Hospital and there in his clinic, he told us that my big brown, hairy birthmark was called Congenital Melanocytic Naevi (CMN).  At this point, little was known about the condition but Dr. Atherton was very motivated to find out more!  Dr. Atherton asked if my parents and I would consider supporting other patients he was in contact with and without hesitation, I shouted out “Yes” as I knew how much my family and I, throughout my childhood, would of appreciated being able to share experiences and gain support from others affected by CMN. This was the very start of the Caring Matters Now support group.  The support started from that moment on and has not stopped since!

My story by Jodi

I look back now and I still find it hard to believe how the charity has grown over the years.  I remember writing my first letter to all of Dr. Atherton’s patients back in 1997, introducing myself and inviting them to the first CMN support gathering in Liverpool.  It was at this time I was studying for a BTEC in Childhood Studies at college and unbeknown to me, the college staff had nominated me for the National Student of the Year Award!  I was gob-smacked to have been nominated for such an award because I was no way an ‘A’ grade student, far from it!  However, because of the amount of education I had missed over the years and because of the CMN support I was offering whilst carrying out my studies at college, I ended up winning the National Student of the Year Award 1999.  This was crazy, because the award was like a passport into any university of my choosing!  So, off to the University of York I went for 3 years and the CMN support group continued to grow during that time.

My story by JodiAfter completing my university degree, I went into fulltime employment until 2012.  Over those years the support group continued to grow, so much so, that in 2012 I left my fulltime employment in order to work part-time in developing the Caring Matters Now charity, as well as giving more time to various ministries within the church I attend.

Today, Caring Matters Now supports over 300 families in the UK plus other families further afield, raises over £100,000 each year for CMN research at Great Ormond Street Hospital, and strives to continue raising awareness of the condition, especially in the medical field.  In the past two years, Dr. Veronica Kinsler (who has continued the CMN research following Dr. Atherton’s retirement) has found the genetic cause of CMN and is now striving to find a cure…. amazing!!

2012 was a big year for me, not just because I started working ‘officially’ for the Caring Matters Now support group, but also because I met my husband Adam who I married 10 months later and in 2014, we had our first baby, a little boy.

The past 35 years have been FULL of so many amazing experiences, that I don’t have the space to write them all here.  I have met lots of inspirational people, worked in some incredible environments, visited lots of amazing places around the world and experienced many challenges which have moulded me into who I am today… and this is all because of my CMN…. not in spite of my CMN.  That is why I can confidently say I am truly thankful to God for allowing me to have my CMN condition.  He knew what was best for me, and He continues to mould me into who He wants me to be.

More of Jodi’s story has been published in a book called ‘A Passion for Life’.  If you would like a copy of this book please click here.

My story by Jodi