The Vascular Birthmarks Foundation

Dr. Linda Rozell-Shannon, PhD President and Founder

My name is Fran. I’m from Pietermaritzburg in South Africa, and my second daughter, Stephanie, was born in 2002 with a lymphatic vascular malformation in her right eyelid and extending up into her forehead. At the time of her birth, the swelling of her eyelid was visible. Local doctors weren’t sure what the problem was and it took us many months to receive the diagnosis of a hemangioma. Due to the lack of knowledge and treatment locally, we were advised that there wasn’t anything that could be done. We were also advised that, being a hemangioma, we could expect the swelling to fade over time.

The opposite happened. Over the years, the eyelid continued to swell, until Steph could no longer open her eye. She would also suffer with immense pain. Our relentless search for a solution proved fruitless. We searched far and wide, and I felt like the first 10 years of Steph’s life involved a never-ending recounting of Steph’s symptoms to doctor after doctor. Never once was there a glimmer of hope. In fact, more often than not, we were left feeling more hopeless with every lead followed.

The difficulties Steph endured, both in terms of physical pain, as well as emotional trauma resulted in us removing Steph from mainstream school and homeschooling her. On one hand, this offered some relief from the incessant bullying, but it left Steph feeling very isolated, confused and resentful. As she entered the rollercoaster teen years, in an effort to reach for some support for myself on how to help Steph through what I knew would be a really challenging time ahead, I searched online social media platforms and found a group for people with hemangiomas. I still remember – it was a Friday night. Steph and her older sister, Justine, were out at a youth group. I plucked up the courage to go online, share a photo of my sweet girl and reach out for some support. You must understand that I was in no way searching for an answer. I was too tired to do any more of that. I had 13 years of disappointments in that area, and piles of letters and MRI scans and photos. I knew all too well that there was absolutely nothing that could be done. In fact, I was told by many doctors that it would be foolish and dangerous to consider any treatment of any kind. That included feedback from specialists in Australia and the UK. No – I was simply reaching out to find out how to guide Steph through the emotional road she would have to travel. I just wanted to hear from other moms who journeyed similar, painful paths and possibly glean some helpful tips.

The outpouring of support and kindness that my one and only post received was just amazing. There’s something very special about the words conveyed by others who have lived similar experiences. But one response was life-changing. I did not know it at the time, though. Our very special and well-loved Dr. Linda saw my post and responded. I thought her response was kind and well-meaning, but I presumed that she needed me to indeed educate her on how “impossible” my daughter’s case was. Dr. Linda immediately advised that Steph’s ‘hemangioma’ looked more like a vascular malformation – and that there was treatment that could be done. Being fully seasoned on where this road of ‘hope’ would end, I cut to the chase and assured Dr. Linda that we had searched the world over – and absolutely nothing could be done. Dr. Linda simply disagreed and so I continued to provide further evidence of the futility of her endeavors. Eventually, unable to dissuade Dr. Linda, we finally agreed to send over MRI scans to back up our side of the story.

As you can imagine – the end result was the most incredible, unbelievable journey. It wasn’t just life-changing, it changed lives – many lives! Not only did Dr. Linda provide the correct diagnosis, but she went on to put us in touch with world-renowned surgeons and the most unbelievable non-profit-organization, The Baby Face Foundation, who provided us with all the financial support to allow us to benefit from 4 trips to New York. There, Dr. Waner and Dr. Fay gave of their time and expertise to debulk Steph’s eyelid and provide world-class care. During each visit to New York, we were provided with outstanding accommodation from The Ronald McDonald Houses – on Long Island and in Manhattan. Words can, in no way whatsoever, begin to convey what such an outpouring of support, expertise, sacrifice, generosity and pure human love was shown to my family and to my precious daughter. It humbled us all beyond words. Every time I retell the story – I get to experience it over and over. It’s never-ending.

Over the years, I have continued to watch the activity that happens online – and have noted how many, many groups and sub-groups have popped up – all with people desperate for answers and help. I honestly don’t know how it is humanly possible for one lady to get to answer so many people online. Dr. Linda is absolutely tireless in her quest to help and to educate. Dr. Linda – if you get to read this – I think you have God-given special abilities! You are inspirational – and I know you must have a very, very special place in God’s heart.

While Steph has had to walk a road that carries a unique set of limitations, it has resulted in an indescribable connection of souls across the world. One that I can only describe as miraculous. No other term would suffice. But I write to share a very special cherry-on-the-top. Something that perhaps is meant to impart a little hope and joy to other parents that find themselves on similar ‘walks’.

Stephanie turns 21 years old this year and my heart is filled beyond anything I could have dreamt of. You’ll see a most special picture below. It is a photograph of my girl getting to feel like a princess on the arm of her prince….at a Valentine’s dinner date (her first ever). To watch her fall in love has been the greatest gift of all. Dr. Linda — you helped give her that precious, precious gift. Aside from the never-ending love and gratitude you surely have from thousands of parents across the globe, you are undoubtedly storing up mighty treasures in heaven.

Thank you for all that you do. You change lives. My love, always.