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). 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 born 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 Vascular Birthmarks 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.
We have both set out in our own ways to raise awareness of vascular birthmarks and the VBF support network, particularly in Europe. Unlike my wife who is a Norwegian doctor, I don’t have the medical knowledge to instigate change on the treatment front, but I do have two legs and a couple of lungs…
THE HORNINDAL RUNDT – NORGES TØFFEST – 8 July 2017
Coined as the toughest mountain race in Scandinavia, The Hornindal Rundt is a 75km ultra endurance event over 20 mountains (Fjell) ascending 5,600m. If I am going to raise awareness, I may as well hurt myself, right?
On 8 July, along with my 2 close friends Jake and Jason, and my brother-in-law Tobias, we aim to tackle the Hornindal in under 15 hours. Our Mission is clear:
We will be flying the VBF flag along the route and hope that you can all support us in any way. Although I have called this “20 Fjell for Flo,” I will be running for everybody who lives with and/or embraces their vascular birthmark, and of course, all those who support our great community.
Now, where are my running shoes…
Please share our link www.birthmark.org/florence to raise awareness across the world.
If you wish to sponsor the team in any capacity, please contact:
Thank you so much for your support!