My name is Tracy, and I am the proud mother of Rey, the little beauty that’s on the cover of this edition of INSPIRE. Around 70% of Rey’s body has CMN ranging from small to large.
Before I begin talking about Rey, it feels that my story wouldn’t be complete if I didn’t start with what a special rainbow baby she is. My husband and I struggled to conceive for 7 years before having Rey. The heartache that I felt at the time is still very much with me; analysing everything I ate, drank or did, counting the days until we could try again and the disappointment when every time we failed. We tried IVF but that also didn’t work. There was nothing “wrong” with either of us medically but the pressure and stress of trying to have a baby just wasn’t working.
Our doctors urged us to go away, enjoy your life and try and let getting pregnant fall to the back of your mind. A very difficult thing to do when your world has centred around getting pregnant for so long! As time went by, my husband and I started to think it just wasn’t going to happen and starting to consider adoption. We decided to start the process in the new year and to spend time to that point partying with friends and going to lots of gig’s.
On Boxing Day 2018 I remember waking up thinking that I should do a pregnancy test… and just like that the test was positive. Now we had been here several times before and each time ended with heartache and so we tried to stay balanced… nine weeks later we had to go to hospital for an emergency scan to check all ok and there she was; bum bum bum went her heart; our little miracle! Sure, pregnancy was hard with worrying I was going to lose her, but she was meant to be, our little miracle baby!
After giving birth to Rey, she was taken to be checked over. The medical staff came over to say Rey had some marks on her but not to worry and someone will come to talk to us about it. Due to having a c-section my husband and Rey were taken to the next room while they took care of me. When I came into the room my husband was crying saying he must prepare me, as the dermatologist team were currently googling what is wrong with her skin. He brought Rey to me, and I remember exactly what I thought… my truly beautiful baby, how long I have wished for you. I spent the whole night with her in my arms just watching her.
My husband went home for a couple of hours and by his return had diagnosed Rey with CMN. A story so similar to others, where research on the internet left us petrified. We were lucky to live in London at the time and so was able to get an appointment at GOSH and saw Professor Kinsler within a few days. For those who have met Professor Kinsler, they will know what a truly amazing doctor she is – providing support, guidance and reassurance. Professor Kinsler talked so fondly of Caring Matters Now and after we gave ourselves time to adjust to life with a new baby, we spoke to the truly amazing Jodi. Within minutes of meeting Jodi, I thought Rey is so lucky to have such an inspirational lady in her life.
As soon as I connected to Caring Matters Now, I wanted to offer my help and support to the charity but at that time Rey was around 6 weeks old and I had to focus all my attention on caring for Rey because soon after I spoke to Jodi, Rey was rushed into hospital after turning blue and stopping to breath. I could write pages on where our life took us back then but it’s such a sad and scary time that I am just going to say that she was diagnosed with severe reflux which would come up and get stuck and stop her from breathing. We needed to watch her 24 hours a day, watching for a chocking episodes so to intervene and keep her safe. Our first one and half years with Rey was centred around keeping her safe and seeing very little people because if Rey got ill, even a cold, it would make her reflux worse.
She’s now 2 and been chocking-episode-free for nine months… we can now take a breath and really enjoy her. She is full of personality and curls!!! We understand the challenges that she may face in the future, but we want to focus on letting her grow with free spirit, confidence and to love herself. We have bought copies of the ‘HOW DO YOU C ME NOW?’ photographic book and use the book as a resource in our community to raise awareness and understanding. It tends to be small children who notice Rey’s mark on her eyebrow and asking what that is. I reply “do you know what a freckle is?” Or ask if they like frozen, they always say “yes” so I reply “well those little brown dots on her nose and cheeks are just like Rey’s on her eyebrow, Rey’s are just a bit bigger”.
I have remained in contact with Caring Matters Now over the past 2 years, and just recently I have felt able to offer my help and support to the charity. I was approached by the Board of Trustees in August 2021 to consider becoming a trustee. I can’t tell you how thrilled and proud I was to be considered for this position. My day job (alongside caring for Rey) is as a self-employed consultant, negotiating multi-million-pound contracts for both public, private and third sector clients, so I hope to use my skills and experience to assist the Board of Trustees in continuing to achieve the charity’s 3 main aims. I look forward to a future that is full of positive challenges and fun!