29 years ago, my beautiful daughter, Katy, was born. A second child for Rob & I to complete our family alongside her brother, Danny. She was born with a large CMN on her leg.
29 years ago, less than 10% of the population had internet access to be able to research these conditions on, so we were completely reliant on the hospital and all the medical staff, and at 6 weeks old, we were told Katy’s CMN was cancerous and had to be removed.
29 years ago, Jodi and her mum Val had just started Caring Matters Now. The advert that I saw in the “Bounty Book” (which was part of a box of samples and information leaflets every new mum left hospital with) led us to them and to a consultation with Dr David Atherton at GOSH. At last, we had someone who knew about CMN and their treatment.
Katy went on to have her CMN lasered at 18 months, which was the recommended treatment at the time, and which didn’t work as the CMN grew back straightaway, but we still had the support of Caring Matters Now to guide us through. In the early years, just knowing that there were others with CMN and hearing about their experiences made all the difference.
As an inquisitive 2-year-old, Danny had been curious from Day 1 about the mark on Katy’s leg and so it quickly became known as her ‘special freckle’, never associated with anything negative, but more as something that made Katy unique. This approach was much easier for a little boy, who loved his sister instantly, to deal with. It also worked well with other young children as she started attending playgroup and up through Primary School. As a bubbly, energetic and confident little girl, Katy’s passion was dancing – a passion that has continued right through her life, leading to endless days in rehearsals, exam classes, shows, more rehearsals and most of the time in leotards with her CMN on full display. Of course, she got second looks some times and questions, but she dealt with them practically and frankly. Even when she joined a boy’s school 6th form at 16, which could have been a difficult time, she quickly answered the question of ‘what’s that on your leg?’ with ’that’s my passport to jump out of an aeroplane and dance with Brendan Cole’ which closed down the conversation with humour and kudos.
I really believe that we were able to install this confidence about her CMN into her because of the support that we had found at Caring Matters Now. To see others living their lives to the full and passing all the normal milestones – school, university, marriage, children – helped us accept that her CMN was only a small part of who she was and who she could be. With that acceptance, we could reassure her all the time that she could do anything she wanted to.
What we didn’t know at the time was that her CMN would actually have a massive impact on her life in a positive way. The skydive and dancing with a Strictly star were just the start of Katy taking control and getting involved in charity life. She’s since completed a walk on Hadrian’s Wall, cycled around London at nighttime, trekked 2 sections of the Liverpool to London event and is about to walk another 25km around London. Perhaps more impressively she has been a Teen Support Contact, an Adult Support Contact, assisted in the development of programmes which help teenagers dealing with CMN and more recently in the development of the new schools programme, the Be Seen award.
As for Rob & I, we became more involved as life evolved over the years. Rob was a trustee and I am the South-East Regional Support Contact. We also share the privilege of taking the Caring Matters Now stand to medical conferences around the Country, passing on everything that CMN stands for to as many people as possible. We know firsthand how much difference that support makes; to have someone who has been through what you’re going through recognise your fears, reassure you where they can and hold your hand where they can’t give you the strength to get through the darkest moments.
29 years later, we are proud to call ourselves part of the Caring Matters Now family.
