I woke up to some devastating news last Saturday. My friend Stephanie died unexpectedly and suddenly. She was 23. You might recognise Stephanie from my blog.

Stephanie is a wife and mother to two toddlers. She made history, being the first woman with Harlequin Ichthyosis to have children. She lived for her family.

 

Our mutual friends have mentioned how generous she was with her time and advice. She was such a role model for patients and families. Her smile lights up the world.

Stephanie told her story for my blog a couple of years ago – emphasising that she loved life so much.

I also wrote about her when she gave birth to her first child.

Her most recent media was in Good Housekeeping. She’s been a fighter since birth.

“I’ve been defying expectations for a long time. When I was born 23 years ago, my mother’s doctors told her that I’d only survive 30 minutes to an hour. Deep cracks in my skin meant I needed to be bandaged head-to-toe to protect against infections, but if the thick skin on my chest couldn’t expand enough, I’d suffocate. My mom was told to start thinking about my funeral. Since I was in the NICU at the time, she just kept asking if I was still alive. Every time doctors replied yes, I was, she said, “Then I’m not planning anything. She’s going to make it.” Mom knew from the beginning that I wasn’t giving up.”

We are not sure of the cause of Steph’s death, but understandably, people are worried about the unknown factors of Ichthyosis. The young women with Harlequin Ichthyosis are grieving immensely.

Rest in power Steph, I’m so glad to get to know you. You have been an amazing online friend. Thank you for talking publicly about your life with Ichthyosis – you changed many people’s lives.

Love to your family and friends, especially your babies, your mum Donna and husband Curt, and also the whole Ichthyosis community. It is so sad. ❤

Late last year, a young man with Ichthyosis, from Australia, passed away. His death was not Ichthyosis related. But it hit hard. I met him at the Australian Ichthyosis Meet in 2015 and immediately I saw his personality set him up for great things. I couldn’t believe the news – too young, too tragic. The Australian Ichthyosis community have expressed our love to his Mum.

Despite the distance, the different types of Ichthyosis, and having never met, the grief is raw. No matter what type of Ichthyosis we have, whether it’s severe and obvious like Harlequin or Netherton’s, or one of the milder or less obvious types, the impact of losing one of our own is colossal. Many of us haven’t met met each other but our bonds are strong. Seeing others with Ichthyosis is like looking in the mirror, and when we meet, we finish each other’s sentences like family – recalling similar experiences. We are family.  I met two women with Ichthyosis in Europe and both of them told me (and I told them) we are like sisters. Adults with the condition offer hope to young people and parents of little ones. Steph, and my young friend Zac, showed the world what good, full lives people with Ichthyosis can lead. Their deaths do not mean they’re in a better place – they’re needed in this world, right now.

When we lose our own, from a small community of people with rare, severe diseases, we are doubly reminded of how fragile life is.

If you could spare a few dollars to support Stephanie’s family in paying her funeral cost, a Go Fund Me has been set up. Or you can share the link. Thank you.