Minutes after Jennie Wilklow gave birth via C-section to her daughter, Anna, the newborn’s skin began to thicken and crack, creating fissures all along her tiny body.
“Things were all seemingly perfect. Moments after her skin hit the air it began to harden and then split causing open wounds all over her body,” Wilklow, 34, tells PEOPLE of her daughter’s birth in September 2017. “For months her skin had been building up but now out of the womb it became dry and hard, like armor.”
Wilklow remembers the shock among the hospital’s staff as Anna’s eyes swelled shut and the circulation in her hands and feet were cut off.
“The doctors and nurses were visibly shaken,” Wilklow, 34, recalls, “and my husband sat silently in the post-op room.”
This hardening of the skin can dramatically affect an infant’s appearance, and cause their lips and eyelids to turn inside out, or create constriction around their chest that makes it difficult to breathe and eat.
In the past, infants born with harlequin ichthyosis typically survive only a few days after birth, but thanks to medical advancements, many with the condition have been able to live into their teenage years or into their twenties with normal mental and intellectual development.
Still, the foundation says, some newborns with harlequin ichthyosis won’t survive if their condition is too severe.
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.
“I decided to stop work and stay home with her fulltime to give her everything she needs and I couldn’t be happier with my decision,” says Wilklow, from Highland, New York. “She has a lot of challenges, but she never complains so neither do I.”
Since Anna’s body produces so much extra skin, she consumes a tremendous 2,100 calories a day.
“We have to adjust to the heat, the cold, and her skin,” Wilklow explains. “[We have] her multiple two-hour baths a day and daily caloric needs, and we have weekly occupational therapy and bi-weekly physical therapy.”
Since Wilklow left her job to take care of Anna, she is hoping to raise funds through donation pages to support her daughter’s medical expenses. A GoFundMe, set up by a family friend, has been able to raise nearly $3,000 from 50 donors since December.
“Anna’s personality is always happy and incredibly loving,” Wilklow says of her daughter. “She steals people’s hearts because even when she is dry and uncomfortable, she’s always smiling.”
“I have learned everything from Anna,” she adds. “To trust myself, to be kind to myself, to wake up every day and try harder than the day before.”
Wilklow hopes that Anna’s story inspires others to focus on the positives, even when things seem dire.
“You can choose happiness. It’s really not about what happens in your life, but instead how you choose to move forward,” she says. “Every morning I wake up and look over at the biggest smile and all I can feel is lucky.”