Jodi Whitehouse: Living With Purpose – My CMN Story
When I look back over my life, it’s astonishing to realise how a condition that once had no name, no explanation, and no support network has become the driving force behind a global community filled with strength, unity, and hope. My journey with Congenital Melanocytic Naevus (CMN) is not simply a story about living with a rare condition; it is a story about purpose, passion, resilience, and the extraordinary things that happen when people come together to create change.
Growing Up With CMN
I was born in 1980 with a giant congenital melanocytic naevus covering around 80% of my body. At that time, no one could explain what it was. My parents took me home with a bag of dressings, a fragile newborn, and a mountain of unknowns.
Childhood for me meant over 30 surgical operations, long stretches in hospital, and missing nearly three years of school. Alder Hey Children’s Hospital became my second home. Yet, amidst those challenges, I developed determination, grit, and a deep empathy for anyone who feels different or misunderstood.
Living with a rare visible difference was often more emotionally demanding than any surgery. People stared. Children made unkind comments. Adults sometimes turned away out of awkwardness, unsure of what to say. My sixmonthly dermatologist appointments in Liverpool involved rooms filled with medical students, all eager to see my rare skin. Instead of doctors educating my parents, it felt as though I was the one educating the medical world.
My parents were committed to building resilience in me. They made brave decisions, like encouraging me to get changed in communal swimming pool changing rooms, to help me learn early how to face the reactions of others. They sacrificed their own pain of watching their daughter be stared at so that I could grow resilience to handle those moments myself. Those experiences shaped a confidence that would become crucial in the years ahead.
Throughout it all, my faith in Jesus has been my constant and quiet strength, grounding me through every fear, every operation, and every unknown.
A Newspaper That Changed Everything
When I was 16, an unexpected twist to my story changed the direction of my life. A Scottish newspaper, delivered inexplicably to a family friend in Liverpool, contained an article about a baby born with the same unusual skin condition as me. That article led us to Dr. David Atherton at Great Ormond Street Hospital, who had desire to understand more about CMN and help children across the UK who were born with this condition.
For the first time, after sixteen years of uncertainty, we finally had a name for my condition.
In that appointment, Dr. Atherton asked whether we would help support other families affected by CMN. Without hesitation, I said “yes.” I knew exactly how valuable such support would have been for my own family.
That moment in 1996 was the birth of Caring Matters Now – a small, heartfelt support group created with a simple aim: that no one should ever feel alone on this journey.
From a Support Group to a Global Charity
What started as a tiny circle of families grew slowly, then rapidly, into something neither I nor my parents could ever have imagined.
I never expected to become the CEO of a leading rare disease charity, but the needs of families, the power of community, and a fire deep within me kept pushing the vision forward.
Over the years, Caring Matters Now expanded from a handful of families to a national and international community. Today, we support more than 900 families in the UK, with many more reached globally through our international partnerships. Together, we have raised over £1.8 million to fund pioneering CMN research. We have created life changing family events, youth programmes and adult support, partnered with world leading expert Professor Veronica Kinsler, and brought CMN into national and international media to break stigma and raise awareness. Our volunteer and professional teams have grown into a passionate and dedicated family, ensuring every person who turns to us receives understanding, reassurance, and hope.
Alongside this tremendous organisational growth, my own fundraising journey has connected me with countless extraordinary people who have stood alongside Caring Matters Now with unwavering support. From climbing Kilimanjaro in 2011 and taking on 24 peaks in 24 hours in 2013, to the Liverpool to London Trek in 2022, a 5k inflatable obstacle challenge with my husband Adam and our three boys in 2024, endless coffee and cake mornings, and a half marathon in 2026 – each challenge has been about far more than raising funds. These experiences have brought together family members, friends, and CMN families in the most inspiring way, reminding me time and again that this charity is fuelled not only by purpose, but by an incredible community whose generosity and spirit make our mission possible.
Every family I meet, every child, every parent, every adult living with CMN, strengthens my determination to keep going.
My Family – A Vital Part of the Journey
Alongside this work, my personal life has flourished in ways I could never have predicted. I am now married and the proud mum of three energetic boys, who bring indescribable joy. They, along with my husband, are an incredible source of strength and encouragement.
They cheer me on, they understand why this work matters, and they have grown up embracing Caring Matters Now as part of who we are as a family. My husband and three boys support, encourage, and walk this journey with me every single day. Their love gives me the courage and energy to keep pushing forward, especially through the most demanding moments.
The Research That Brings Real Hope
One of the most transformational parts of this journey has been our partnership with Professor Veronica Kinsler and her research team. Together, we have supported the discovery of the genetic cause of CMN – a breakthrough the medical world had been waiting generations for. Today, for the first time in history, targeted treatments are being developed that hold the potential to dramatically change outcomes for children and adults living with CMN.
For a condition once surrounded only by uncertainty, this represents true hope – hope that once felt impossible.
What drives me now is simple and unshakeable:
No child or adult living with CMN should ever feel fear, isolation, or face the risk of losing their life because of this condition. Not now. Not ever.
Why I Wouldn’t Change My Story
As a child, I didn’t want to stand out from the crowd by looking difference. But today, I can say with complete honesty, I love the skin I am in!
It has given me a voice.
It has given me a mission.
It has given me a worldwide family.
It has given me purpose.
And it continues to lead me into the most extraordinary chapters of my life.
The Journey Ahead
People often ask what keeps me motivated. The answer is always the same: the scared parents contacting us when their baby is born; the children who attend our events unsure of themselves and leave standing taller; the adults who finally feel seen and understood; and the families who have experienced loss, who fuel my determination that no one should ever suffer or die because of CMN.
Caring Matters Now exists to change futures, to build community, to drive groundbreaking research, to give hope. And we are only just beginning.
Join Us
My personal story may have sparked this journey, but the future of CMN support, awareness and research depends on all of us.
Whether you donate, fundraise, raise awareness, or simply share our message, you become part of the story – part of the change that ensures every person affected by CMN feels seen, supported, and full of hope for their future.
Together, we are turning challenges into breakthroughs and difference into strength.
To follow Jodi’s journey more closely, go to instagram.com/jodi.whitehouse.cmn.
