Washington: Jennie Wilklow’s daughter Anna has a strange condition. Minutes after she was born via C-section, the newborn’s skin began to thicken and crack, creating fissures across her body.
Speaking to People magazine, Wilklow said that out of the womb, her daughter’s skin became dry and hard, like armour.
Wilklow remembers the shock among hospital staff as Anna’s eyes swelled shut and circulation in her hand and feet were cut off.
It turns out that Anna was born with harlequin ichthyosis, a rare condition that causes newborns to form thick plates of skin, according to the First Skin Foundation.
According to experts, the hardening of the skin can dramatically affect an infant’s appearance and cause their lips and eyelids to turn inside out. The condition further creates constriction around their chest and makes it difficult to breathe and eat.
While the mortality rate for the condition used to be high earlier, medical advancements have allowed survival rates to increase.
Treatment for the disease is extremely intensive and involves a thorough skin care regimen that aims to keep the skin moisturized and soft to prevent infections. Wilklow covers Anna in Aquaphor, a healing ointment, every few hours.
Wilklow decided to stop work and stay home with her fulltime to give her everything she needs. Since Anna’s body produces so much extra skin, she consumes a tremendous 2,100 calories a day.
Ann needs to have multiple two-hour baths a day and daily caloric needs as well, along with weekly occupational therapy and bi-weekly physical therapy.
However, Wilklow says that Anna’s personality is always happy and incredibly loving. “She steals people’s hearts because even when she is dry and uncomfortable, she’s always smiling,” she adds.
Wilklow hopes that Anna’s story inspires others in similar conditions to focus on the positives, even when things seem bleak.