Little baby girl has to take multiple 2-hour baths a day to keep skin from cracking
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.
#MaebandGivesBack— Maeband by @HollyKjar (@MaebandLLC) January 12, 2019
Anna was born with a rare and debilitating condition called Harlequin Ichthyosis, in which her skin dries and hardens at an accelerated rate upon exposure to air.https://t.co/0tJqiB4JfH
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.
We are so happy to be able to help baby Anna from Ulster County who suffers from a rare disorder called harlequin icythosis. Harlequin ichthyosis is a severe genetic disorder that mainly affects the skin. Infants with this condition are born with very hard, thick skin. pic.twitter.com/UxqqGlxPAx— Ryan's Foundation (@ryansfoundation) July 18, 2018
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.
May is International Ichthyosis Awareness Month. I'd like to introduce you to Anna 😀 she is absolutely adorable.— Mel Eddy 🏳️🌈💙💚✊ (@Melmoeddy78) May 4, 2018
Anna was born with Harlequin Ichthyosis, the most severe form of ichthyosis.
Please join us in... https://t.co/O98ziRtdfq
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.”
Part 3 #Harlequinichthyosis— Kishlb (@MsMi33i33ippi) January 6, 2019
is a severe #geneticdisorder that mainly affects the skin. The newborn infant is covered with plates of thick skin that crack and split apart. The thick plates… https://t.co/zVctzZIFfd
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. ♥️♥️♥️”
This is the second YouTube video in my series; My Life, with Epidermolysis Bullosa Simplex & Depression! I recommend , to first watch my 1. video; THIS IS ME - My Life, With EB & Depression, and then come back, to watch this one...— GeeTee (@ThorsenGry) January 16, 2019
My YouTube Channel: https://t.co/w2C5uNsssl pic.twitter.com/kouxlzoHoU
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.
Proceeds from the show will benefit the the Chris And Vicky Cornell Foundation as well as the Epidermolysis Bullosa Medical Research Foundation (EBMRF). https://t.co/dSoowlUJzt— EB Info World (@ebinfoworld) January 14, 2019
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.
Heres some stuff to try Kim. Stop eating dairy&meat. 100% Stop spray tanning and use only natural products. Derived from mother earth only. Detox ur body from chemicals and animal products for 6 months and then decide if u still need to take medication. Your skin will thank you!!— Aɳɠҽʅα Sƙყҽ 💫 (@A1_AngelaSkye) December 24, 2018
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.
I am diagnosed as having in the top 10% most severe cases of psoriasis in Australia. I have tried every medication and the only thing that has worked for me is "Cosentyx" injectable biological medication. Now I completely psoriasis free now.— Teale Coco (@TealeCoco) December 24, 2018