Harlequin ichthyosis also referred to as “Harlequin baby” is a extreme genetic pores and skin illness, which causes the dermis to be round 10 instances thicker than regular and grows at a quick price. Babies with Harlequin ichthyosis are sometimes born prematurely or stillborn and are often very small. However, kids who survive will want lifetime intensive pores and skin therapy, lotions and retinoid medication and plenty of require physiotherapy and counselling.
Sufferers not solely have a thick and fast rising pores and skin, the situation forbids them to develop a lot hair and their ears and eyelids are receding. They are additionally extremely inclined to germs, which might usually be blocked by the pores and skin’s outer barrier.
Amazingly one Harlequin ichthyosis survivor has been defying all odds and even grew to become the primary particular person to have a child dwelling with this situation. She goes by the title of Stephanie Turner.
Stephanie Turner from Arkansas, was born with Harlequin ichthyosis.
Doctors warned that she might not survive within the first few days of her life. Fortunately, she is now at 23, and the oldest particular person within the US to reside with Harlequin ichthyosis…
And the primary to have a child when she gave beginning to her now two-year-old son.
Despite the hazard of being pregnant with the situation, Stephanie proved them fallacious not only for having her first child but in addition for giving beginning to her second baby.
But earlier than these superb moments of her life, she admits that the dysfunction gave her a tough time and needed to endure hateful feedback.
She stated, “I’ve actually had someone come up to me and ask if I was in a fire.”
Stephanie believed that her survival is partly due to the cream that retains the micro organism at bay and it additionally lubricates her powerful pores and skin and restricted limbs.
She stated, “I always spend about 15 minutes putting lotion on because my skin is so tight and doesn’t have any give.”
“The skin is the only thing I’ve ever known, it’s just born like this so I don’t know how to look at myself any different,” she added.
Stephanie’s optimistic angle in the direction of her steady discomfort and ache captured the center of now-husband Curtis.
Curtis stated, “When I met her I didn’t see a person with a skin disorder, I just saw a beautiful woman. She was funny and she’s always trying to make things positive.”
The couple acquired married months later and shortly after, Stephanie acquired pregnant on her first child risking her life.
Pregnancy in ladies with Harlequin ichthyosis is life-threatening as a result of the stretching of the abdomen can worsen their situation.
Stephanie stated, “The doctors couldn’t tell us anything because I was the first one to consider having a baby.”
But God is sweet, the being pregnant worry turned out to be useful for her uncommon pores and skin situation and she or he gave beginning to a wholesome child boy.
Two years later she acquired pregnant once more and gave beginning to a wholesome child woman.
Now the couple are mother and father to 2 kids Willy, aged two, and Olivia, aged 4 months. Luckily, each of the youngsters escaped their mom’s painful situation.
Stephanie stated, “I can’t tell you what good of a feeling it is just to have your children healthy and happy. I hope the future holds nothing but happiness. I’m sure there will be a few bumps along the road, but that’s life. We’re just focusing on my two perfect babies and my wonderful husband.”
“Stephanie is a super-mum, she can be doing 50-different things at once and still have time to smile and take care of both the kids,” amazed Curtis stated.