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When Stephanie Turner was born 23 years ago, doctors advised her mother to begin preparing for her funeral.
Stephanie was born with Harlequin Ichthyosis, a genetic condition that makes it impossible for a person’s skin to stretch during growth or movement. Because of this, doctors didn’t think Stephanie would survive for longer than 30 minutes that day.
But Stephanie’s mother refused to begin “planning anything.” She knew that her daughter would pull through.
And Stephanie ultimately did. It took a lot of tender loving care from her mom – applying Aquaphor lotion and wrapping gauze all over Stephanie’s peeling skin – but Stephanie more than survived. She lived and learned how to take care of herself, even when there was little information on how to handle her condition.
When Stephanie turned 20 and met the man who would later become her husband, her doctor gave her another warning: Don’t get pregnant.
Her doctors didn’t think that Stephanie’s body would be able to accommodate the growth and stretching during pregnancy, and any child that she carried would have a 50% chance of also suffering from Harlequin Ichthyosis.
Stephanie and her husband, Curtis, however, chose not to listen.
She had always known that she’d wanted to be a mother, and Curtis simply knew that he wanted to start a family with the love of his life. And if the child was born with Harlequin Ichthyosis, Stephanie thought, “Who better to take care of my baby than someone who knows what it's like to go through this?”
Two years ago, Stephanie became the first person with Harlequin Ichthyosis to give birth to children. Her family now not only includes herself and her husband, but also their two children: Willie, two, and Olivia, one. Neither of the children were born with Harlequin Ichthyosis.
Their entire family is incredibly close and Stephanie is proud to say that her children, because they’re growing up under a mom who has a genetic condition, are incredibly welcoming, loving people to anyone they meet.
