My daughter Saoirse was recently diagnosed with Parry-Romberg syndrome, following two long years of fighting for answers and a diagnosis. Being dismissed repeatedly by our GP left me feeling helpless and, at times, like I was overreacting. So when the diagnosis finally came, it was emotional, but also a relief.
Parry-Romberg syndrome is a rare condition characterized by the gradual loss of tissues on one side of the face. It affects each person differently, which means there are more unknowns for us than answers at the moment. That uncertainty has been hard. But, from the start, we’ve made it a point to talk openly about the diagnosis with Saoirse. It’s often a dinner table topic, to make it our new normal, and not something that Saoirse should worry about or fear.
The guilt can be overwhelming. I know this isn’t my fault, but that instinct to protect never goes away.
Saoirse accepted the news with her usual wisdom: “At least now we know.” She really is wise beyond her years. She’s a vibrant seven-year-old who loves to play, read books and sing at the top of her lungs to her favourite songs. She also loves to be creative – drawing and making things as presents for her friends and family. She has a dry sense of humour, a strong sense of self and even stronger sense of style, insisting on choosing her own clothes and hairstyles every day.
Saoirse has unfortunately had some unkind comments about her appearance and has questioned why she is different to everyone else. Heartbreakingly, she once asked me: “mummy, am I ugly?” I see her discomfort most clearly in everyday moments, like at the hairdresser. When she first started noticing changes in her face, she asked for a sweeping fringe. Now, during trims, the moment her fringe is lifted, she instinctively looks away from the mirror.
Her confidence usually shines through, but I worry it might falter more as she grows older and more self-aware. We’re doing everything we can to build her up, talking openly as a family about how our differences make us beautiful. I even showed her a lesson I use in class, where symmetrical faces of “perfect” celebrities look strange when their faces are made perfectly symmetrical. No one’s face is the same on both sides. No one is perfect.
Anna knows Saoirse will wobble along the way and it won’t always be easy, but she hopes her support network will help her through.
I always remind her she’s beautiful just as she is. But I also support her when she wants to try makeup or a new hairstyle, just as I do. We have spa days and shopping trips, giving her space to feel in control of her appearance and express herself.
Saoirse has met any negative comments with confidence in the moment telling them “I have Parry-Romberg syndrome, I’m just different.” Most don’t argue with her or say anything back. But the pain often catches up with her later, in quiet moments at home. She doesn’t understand why people feel the need to comment at all. Children are usually kind or curious – but sadly, it’s adults who can be the most thoughtless.
We don’t know how much her face will change over time, and that uncertainty is hard to prepare for. As her mum, the “not knowing” is the most difficult part. There’s nothing I can do to stop the condition from affecting her physically, but I can make sure she grows up feeling supported, seen, and strong enough to be herself.
The guilt can be overwhelming. I know this isn’t my fault, but that instinct to protect never goes away. All I can do is ensure she has the tools, space, and confidence to face whatever comes next.
We can ensure she is a fierce warrior with the strength to be herself no matter what.
Saoirse is so much more than her diagnosis. From the start, we’ve made sure she feels part of the journey, talking honestly and involving her in every decision. It’s helped her feel some ownership over her condition. And I truly believe that’s why she continues to be the happy, smiley, full-of-life girl we know and love.
Parry-Romberg will take something from her physically and there’s nothing myself or her family can do to stop it, but we can ensure she is a fierce warrior with the strength to be herself no matter what. She will wobble along the way and it won’t always be easy but I hope her support network will help her through.
