Mom tries to raise awareness for her daughter’s rare skin condition causing her skin to constantly thicken and crack.
Only minutes after Jenny Wilkow gave birth via C-section in the fall of 2017, baby Anna’s skin began to create crackling fissures all over her tiny body.
The hospital staff was unsure of what to do and visibly shaken as Anna’s eyes swelled shut and circulation to extremities got cut off.
Baby Anna was born with a rare skin condition causing her skin to form thick plates of skin that split and crack all over the body. This can make it difficult to breathe and eat and dramatically affect the infant’s appearance and is called harlequin ichthyosis.
Babies born with the disease had typically only survived for a few days after birth in the past. But medical advancements have given those with the condition the ability to live into their twenties without any mental deficits.
In some of the newborns with harlequin ichthyosis, the condition is too severe to survive. Treatment of the condition is intensive and require a strict skin care regimen to keep the skin moisturized and infection free.
Anna’s mom, Jennie stopped working to take full-time care of her and covers her with a healing ointment, Aquaphor, every few hours.
Baby Anna produces so much extra skin that she burns around 2,100 calories, so Jennie has to watch her diet carefully as well, as Jennie described the daily routine:
“We have to adjust to the heat, the cold, and her skin. We have her on multiple two-hour baths a day and daily caloric needs, and we have weekly occupational therapy and bi-weekly physical therapy.”
Family and friends set up a GoFundMe page to help the Wilklow family with medical expenses and support for baby Anna. To date they have raised $6,953 and recently posted an update of gratitude for the help they have received so far as Jennie wrote:
“Thank you so much, everyone, ♥️ The difference you are making in our lives is astronomical, and I will never forget this kindness. ♥️♥️♥️”
Through social media, the Wilklow family hope to create more awareness around the disease and to share Anna’s unique journey.12-year-old Destiny Fuentes have lived with a similar condition, with children suffering from it often referred to as ‘Butterfly Children.’
Epidermolysis bullosa causes the skin to blister and tear during normal activities and is characterized by babies missing the type VII collagen protein, which connects the top and underlying layers of skin.
When Destiny was born her father David was shocked and said:
“When she was born, I just remember her legs being a different color, like raw flesh, like straight red meat. We were all confused. We thought she had peeled her skin off.”
Destiny is in constant pain and has to be wrapped up with bandages almost entirely, every day. She prefers to use a wheelchair as even walking is painful, and like Anna’s parents, Destiny’s also aims to raise awareness about these debilitating skin conditions.
With some celebrities sharing their skin conditions, it helps to put the subject in the spotlight. Just recently Kim Kardashian took to social media to ask with help regarding her psoriasis, which has systematically been getting worse.
Many fans gave advice that ranged from natural remedies, including diet changes to certain medications and treatments. Their conditions may not be comparable but it still creates awareness, and through that light can be shed on many difficult issues.
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