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Alice, Dan and their daughters Chloe and Lily at a wedding. They're a brunette family, stood in front of a church door. Lily is held high in her dads arms, smiling cheekily at the camera.

Lily’s story: “Her big smile wins their heart.”

Alice and Dan share their experiences of having a 19-month-old daughter, Lily, who has Sturge Weber syndrome.

    Hi, we’re Alice and Dan. We have two daughters, Chloe aged six, and baby Lily, who is 19 months. We’re a close-knit family of four living in a small town in Worcestershire. 

    Our daughter, Chloe, is the average sassy-six-year-old. She has an answer for everything! She’s very girly and loves her baby sister, Lily. Chloe and Lily are so close, the bond they have is beautiful to watch.  

    Lily is amazing. She’s a smiley baby and loves her food. She’s very observant and has a cheeky personality. She loves wriggling to music and her favourite song is Green Green Grass by George Ezra. She has a huge heart. 

    We will always raise Lily to know that she is beautiful. We will teach her that “if everyone looked the same, the world would be a boring place”.

    Alice and Dan, Lily’s parents

    Lily has a facial port wine stain. It covers most of her face. Lily also has a condition called Sturge Weber syndrome. This has caused her to have right-side body weakness. The physical differences aren’t noticeable yet as she’s not fully mobile. 

    As mentioned before, our family is extremely close and we’re an amazing support system to each other. Lily’s Sturge Weber syndrome has sometimes felt stressful, but tough situations make us feel stronger, together.  

    As a family, we don’t see Lily’s visible difference. We just see our beautiful little Lily. Having a birthmark doesn’t define you as a person – it’s what’s inside that counts. 

    When we brought Lily back from hospital, Chloe asked why her baby sister’s face was red. We sat her down and explained that it was a birthmark. Chloe was four then, but she’s always been forward thinking and understanding for her age, and she accepted Lily as the beautiful baby sister she’s been since day one. 

    Baby Lily sat on the kitchen floor, smiling cheekily towards the top right corner of the picture. She has a port wine stain that covers most of her face. She's wearing a baby grow that reads: "big smiles for mama"

    Lily is a smiley baby with a cheeky personality.

    One of our main worries in those early days was the thought of Lily getting bullied at school because of her visible difference. It’s odd to think that at a few days old, school had already crossed our minds. But we live in a scary world, and sometimes, people do not respect or value difference. We also held back setting up an Instagram account that follows Lily’s journey at first, although we knew it would help us. Alice even set one up and then took it down again – hours later, in fear that there would be negative comments! But once she’d built up the courage, the response we got was warm and so supportive.  

    We’re lucky – we haven’t noticed any comments being made about our daughter’s visible difference, or many people looking. It’s not something we look for – we just put all our focus into having fun and making sure our girl is having the best time.  

    Lily has a part to play in other people’s reactions, too. Her big smile wins their heart, and everyone has such lovely things to say.  

    We will always raise Lily to know that she is beautiful. We will teach her that “if everyone looked the same, the world would be a boring place”. We know deep down there won’t always be positive days, but when confidence blips occur, we will be there to lift Lily up again, to reassure her that she is loved and that her appearance does not define who she is. 

    We just see our beautiful little Lily. Having a birthmark doesn’t define you as a person – it’s what’s inside that counts.

    No matter what challenges we face as Lily grows up, we’ll also have the support and guidance of Changing Faces. Whether it’s one-to-one wellbeing or counselling support for Lily, joining a parent’s online support group or even giving them a ring to talk through current challenges, we both feel confident knowing we’ve found a charity that will support our child as we navigate her visible difference. 

    As a family, we work hard to raise awareness of visible difference. We’ve done a few interviews and our Instagram page also celebrates Lily’s difference. We like to think we’re helping to educate the world, one small step at a time.  

    We’d love to see more representation on big platforms, like films and TV shows. The dream would be that one day, everyone will be accepted – no questions asked! 

    Lily is strong and determined – even at this young age. Whatever her future holds, we will always be there to help guide and support her, reminding her that she can be anything she wants to be, regardless of her visible difference. 

    Hannah and Michael sitting down, laughing

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