In last few weeks, there have been several stories about people affected by Harlequin Ichthyosis in the news, worldwide.
Mui Thomas and her family stepped out in their very first interview ever last week, sharing about how her parents adopted the now 22-year-old in Hong Kong when she was a baby. Mui is a fantastic young woman – determined and spirited. She loves to be active and is a rugby referee, which is a huge feat considering people with Harlequin ichthyosis can’t sweat and have trouble regulating their body temperatures! She doesn’t let that stop her from doing what she loves.
And this week, a new feature on Stephanie Turner aired, focusing on the birth of her daughter Olivia a few months ago! In 2013, we had the pleasure of meeting Stephanie and her family in person. Her son Willie, who is almost two now, was just a baby then, and I’m dying to get to meet Olivia now!
Stephanie’s story also got picked up by Redbook Magazine’s blog.
When Brenna was born, there wasn’t much sharing going on. We found a news article here and there about some of the young adults around the world who were survivors – a young man named Ryan (the oldest in the US) who participated in triathlons, and a pair of sisters in England. But mostly, Hunter was the only one who continually showed up again and again to tell her story and to advocate for visual difference.
Just three years later, families around the globe are beginning to step forward and tell the world about this rare disorder and what it is like to live with or care for a loved one with it. Our friends, the Gallagher family, are the only family in Ireland affected with HI and have made all kinds of efforts to raise awareness about their beautiful daughter Lucy. Our friends, the Fascianos in Connecticut (who came to visit us in 2012), did their first news interview last year. And so many are sharing their personal stories on blogs now.
When people make the choice to share their stories about rare disease, they are both educating and giving hope.
They are saying “this is my life, this is how I’m living and this is why I do things the way that what I do or look the way that I look.” It gives others – who likely have never even heard of the disorder before – the chance to really understand, to step into their perspective and into their world. And this perpetuates acceptance on a broad level, fostering empathy and kindness and openness.
And when these people affected by rare disease choose to tell their stories as ones of courage and love and beauty, they give hope…hope to people experiencing similar emotions, challenges, and triumphs, and hope to families like ours, who will be in that same season or situation one day. Hope for happiness, hope for achievements, and even hope for the seemingly mundane – that things will simply be easier someday or that there is very real possibility for a typical family life with a husband and children.
I know it’s not for everyone, and that’s OK. Choosing not to publicly share your story is OK too, because that is what is best for you and your family.
But I applaud all of those people who are stepping out to share around the world, because you are educating and advocating for not just yourself but also for my daughter and family, and for all of those families who encounter the same ignorance on a daily basis. And you are giving us such a gift: hope.