she was born with this rare disease then doctors realized it’s permanent, her family says first there was a small wart on her left foot which started to expand and slowly scales began to form on both her feet over time. the scales moved all the way up her arms to her neck leaving the girl immobile and in pain Jenny willow said things were seemingly perfect when her daughter Anna was born via C-section in September 2017, but everything changed in an instant according to the people the now 16 month old was born with a condition that made her skin crack open just minutes after birth moments after her skin hit the air it began to harden and then split causing open wounds all over her body.
she told people, for months her skin had been building up but now out of the womb it became dry and hard like armor. the doctors and nurses were visibly shaken and my husband sat silently in the post-op room she added Anna was soon diagnosed with Harlequin ichthyosis a rare skin condition in which infants are born covered in thick scales of skin according to the National Organization for rare disorders Nord it affects approximately one in five hundred thousand individuals in an email to Insider wilklow said that Anna was diagnosed within an hour of her birth and spent the first month of her life being cared for in a medical center my reaction was just complete shock because, just a few minutes before I thought I was having a perfectly healthy baby girl she told Insider it’s the kind of moment that stays with you forever and reminds you every day just how precious life is Harlequin ichthyosis is a genetic condition affecting the skin Anna was born in September 2017. courtesy Jenny wilklow harlequin theosis is caused by mutations ABC a12 Gene which gives the body instructions on making a protein that’s critical for normal skin cell development according to the genetic and rare disease information center Gard people with the condition inherit one copy of the mutated Gene from each parent babies born with the condition.
are covered in thick skin scales the Skin’s tightness can pull on the eyes and mouth making the lips and eyelids turn inside out or pull across a baby’s chest and abdomen causing breathing and eating difficulties according to the Nord babies with Harlequin ichthyosis are typically born premature too and are also at higher risk for infection dehydration and other complications . the thick skin scales gradually shed over the first weeks after birth the nordads in the past babies with the condition often did not survive long after birth people noted in its report but according to the foundation for ichthyosis and related skin types virus improved neonatal care has increased survival and several people with Harlequin ichthyosis are living in their teens and twenties still some newborns with the condition don’t survive once the thick skin scales present at birth have shed the skin is red and can be covered in thin scales treatment for these ongoing symptoms involves the use of emollients which help keep the skin moisturized preventing cracks that may lead to infection according to the Nord to keep her skin from cracking and is covered in healing ointment and bathed multiple times a day Anna is covered in ointment every few hours to protect her skin.
courtesy Jenny will glow to keep Hannah’s skin from cracking wilklow gives her two hour baths multiple times a day and covers her in the healing ointment Aquaphor every few hours, people reported Anna also receives occupational and physical therapy and because her body produces so much extra skin she needs to eat around 2 100 calories every day people’s report added ” I decided to stop work and stay home with her full time to give her everything she needs and I couldn’t be happier with my decision willow told people she has a lot of challenges”,. but she never complains so neither do I after wilklow left her job to care for her daughter a family friend set up a gofundme to raise money for Anna’s medical expenses according to people as of this writing donors have contributed more than ten thousand dollars thousands of Dory on social media has lots of fans online courtesy Jenny wilklow Anna has captured thousands of hearts on social media the family maintains a Facebook page titled hope for Anna with 48 000 likes and an Instagram profile username Harlequin Diva with more than 24 zero followers each page is populated with photos and videos of Anna playing
