I’m Sara, mum to Lacey. She’s six years old and the happiest, bravest little girl. Lacey was born with a port wine stain birthmark over 90% of her body, which is both external and internal. Not only does she have a facial difference, but she also has many other challenges due to the placement of her birthmark. This includes Sturge-Weber syndrome, as the birthmark is also on her brain. As a result, she has epilepsy and hemiplegic migraines, as well as glaucoma. Lacey is also on the pathway for brain surgery.
Lacey spends a lot of time in and out of hospital, having tests, scans and surgery. Every four months, she has laser treatment on her birthmark. Living with a facial difference can be ever so challenging as it is, but having surgery that makes your difference stand out, makes it a lot harder. But does this effect Lacey? No. She is the most resilient little girl. She loves her laser dots and says that they give her superpowers. She’s my very own superhero.
Lacey following laser treatment
Unfortunately, we’ve received several inappropriate comments about Lacey’s birthmark. One time, she went for a doctor’s appointment, and the receptionist asked us to sit in a room away from everyone else in case Lacey was contagious. This was upsetting, but when I explained that Lacey has a birthmark and isn’t contagious, the receptionist was very embarrassed and apologetic.
I’ve also been asked if Lacey has been burnt or had an allergic reaction and been told to put sun cream on her because she looks very sunburnt. One person said that it’s a good job that she’s a girl, so she can wear make-up when she’s older to hide the markings on her face. It’s amazing how bold people can be.
Comments and inappropriate questions used to upset me and make me feel anxious to take Lacey out in public, as I didn’t want people to think I had hurt her. However, I soon came to realise that people’s opinions really don’t matter. In fact, I should be out there, prepared for comments and questions so I can educate people on her condition.
Knowing there’s support available is vital in this journey.
There is always going to be an element of concern for Lacey as she grows up, because no matter how resilient she is, some people can be very unkind, and this could affect her confidence as she gets older. I hope that even in the face of any negativity, she remains the strong, independent and brave girl that she is! She deserves to have the brightest future. It would be amazing to see her in advertisements, proudly showing her visible difference.
My biggest piece of advice for parents of children with visible differences is to not let other people’s ignorance affect you. Never let the opinion of someone who doesn’t know you or your child make you feel like you’re a bad parent. Instead, take their comments and questions and use them to your advantage by educating them. Get out there and show your child off, because their “imperfection” is perfection.
I’m running 10k to raise funds for Changing Faces, because I think it’s an incredible service. When Lacey was born, I hadn’t heard of port wine stain birthmarks. I didn’t know anyone else that had one, so there was no clear support network. As you can imagine, as a mum with a newborn baby, that was hard. I’d love to give back to Changing Faces, because knowing there’s support available is vital in this journey. If you’d like to, you can donate via this link. Thank you!
