Vascular Birthmarks Foundation

Day of Awareness



FLORENCE SOFIE

The final days before the delivery of your first child bring an array of emotions; excitement, apprehension and in some cases, outright fear! The endless months of preparation don’t quite feel enough and the final tinkering of changing tables and prams only prolong the heightened sense of nerves – good or bad.

When your child finally arrives, everything seems to fade into the background. The self-perceived ‘big things’ suddenly become small compared to this beautiful gift you have created.

For some parents however, the initial joy of holding their child and kissing the soft skin can be replaced by an uneasy feeling. The feeling you get when you notice something out of the ‘ordinary’. Something that the handbooks hadn’t warned you about and the pre natal classes didn’t teach you. The distinct red mark on your child’s body that doesn’t quite have a place there. On 27th October 2016, my wife and I experienced this exact range of emotions.

Our newborn daughter, Florence Sofie, was born with the red mark across one side of her face. The mark, unbeknown to us at the time, was to change our lives forever.

The Vascular Birthmark

It didn’t take long before we were told our daughter had a Port Wine Stain (PWS). We were abruptly told: “It is a vascular malformation of the capillaries - but don’t worry, it’s just cosmetic.” The process then began of telling our close friends and family that our beautiful daughter had been born healthy at 11.16am with a BUT... at the end of our messages and calls.

It turns out it isn’t just cosmetic and can be linked to a more serious condition, Sturge Weber Syndrome. We then went through the stressful process of MRIs, eye checks and endless referrals and we were left completely bewildered. We knew there had to be other parents, other children, but at this time we felt so alone. The exhausting process of constantly having to explain the birthmark to close friends and family began to take its toll – until we found the Vascular Birthmarks Foundation (VBF).

Any parent who has a child with an ailment, deformation or sickness will testify that there comes a time when the first line support of friends and family needs to be supplemented with professional, experienced support – a second line support, if you like. For us, this came in the form of VBF.

My wife found the foundation through social media and it opened up a global community to us--one where we are able to share stories, struggles and successes with parents across the globe. It has also set us on our course of treatment after advice from specialists within the foundation. I don’t exaggerate when I write about how important the VBF was and is to us.

Since discovering the VBF, we have been to New York several times for treatment with Dr. Roy Geronemous. This all seems well except that we travel from Norway in order to seek the treatment!

I am English and my wife is a Norwegian doctor. We were both shocked by the general level of understanding and practice in Europe. We have therefore both set out in our own ways to raise awareness of vascular birthmarks and the VBF support network, particularly in Europe.

Please see our page to raise funds and awareness during the 2017 Hornindal Rundt, the toughest mountain race in Scandinavia: 20 FJELL for FLO.

 

We are making a difference!