Those nine months a mom carries her baby are filled with joy, anticipation, and a dose of uncertainty. What the new parents hope for is their bundle of joy to be healthy. Sadly, that is not always the case.
Jennie Wilklow, from Highland, New York, couldn’t wait to meet her daughter. She and her husband were over the moon to hold her in their arms. All the ultrasounds and doctor’s appointment suggested the baby was healthy, so they were eased and never thought sweet Anna would be born with a condition that would change all of their lives forever.
Jennie delivered Anna via C-section at 34 weeks. Doctors told her she looked beautiful and that was all Jennie needed to hear at that point.
Shortly after, the proud mom heard her daughter cry, and that was just another sign that everything was right with her little jewel.
When her husband visited Jennie, he was strangely silent and looked worried and puzzled.
“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie shared with Cafe Mom.
“He just kept saying, ‘It’s bad.’ What does that even mean? I thought in my head. He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’”
Anna was diagnosed with harlequin ichthyosis, a rare condition that causes thick diamond-shaped plates that are separated by deep cracks. “As they tried frantically to help her, her skin hardened within seconds (of birth). After hardening, it began to split, causing open wounds all over her body,” Jennie told Cafe Mom.
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Although doctors weren’t sure she would survive, Anna beat the odds and is thriving. “She was beauty in the purest form,” her mom said.
There isn’t cure, and the treatment is quite demanding as it requires constant baths and keeping the skin as much moisturized as possible. “Every couple of hours I covered her with Vaseline and bathed her for many hours of the day. I had dreamed for years about the things my baby would wear, and though it seemed so trivial, it was what I struggled with most,” Jennie said.
In an attempt to raise awareness about this condition, Jennie posts photos of Anna on her Instagram page harlequindiva. She opens up about the everyday struggles and what it is like to have a child with harlequin ichthyosis.
“Anna captured everyone’s hearts because she is the purest form of perfection. Doing the work every day is simple when I’m doing it for her, and with every new accomplishment, the world celebrates with me,” Jennie told Cafe Mom.
She adds, “I now understand that I was given her because of the love I already carried in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world what true beauty is.”
Baby with White Hair Overcomes Challenges and Shines with Happiness
Any parent would be happy to have a newborn, and Patricia Williams was no different. She thought her baby Redd was perfect when he was brought into the world. She had no idea that his unusual features would present obstacles as well as opportunities for success in the years to come.
Patricia and her husband Dale became aware of their son’s lateral eye movements when he was only two months old. Fearing for their lives, they searched Google and discovered something unexpected: it might be an indication of albinism. One in 17,000 individuals worldwide suffer with albinism, an uncommon disorder marked by pale complexion, white hair, and tracking eyes.
Patricia and Dale sought a formal diagnosis, and after consulting with experts, it was determined that Redd had Oculocutaneous Albinism Type I (OCA1). The pair was surprised since they were unaware of this illness. However, this realization was only the start of their adventure.
Redd’s unusual features presented difficulties as he grew older. He was the victim of bullying at school, but fortunately, his elder brother Gage stood up for him. When Patricia’s second son, Rockwell, was born with the same issue, her early hopes that Redd would outgrow his unique qualities were dashed.
The difficulties persisted after that. Rockwell’s photos were twisted into cruel memes on social media, adding insult to injury for the family. However, Patricia and Dale took a bold choice rather than focusing on the negative. They made the decision to become activists for albinism, spreading knowledge to stop bullying of other kids who have the illness.
Patricia became determined to spread awareness about albinism after realizing that most people had limited understanding of the condition and that uncommon films and scant representation had largely shaped people’s opinions. She recognized that she had a rare chance to dispel myths and raise awareness of this illness.
Redd’s strabismus was treated with eye surgery in order to improve his condition. The procedure worked, and Redd did well when he went from attending a school for the blind to a public one. He accepted himself and his special qualities with the help of his devoted family and friends.
Redd and Rockwell are still happy now and continue to shatter stereotypes. Apart from needing a hat, sunglasses, and sunscreen when playing outside, they are just like any other kids in the world. Love and adoration for Patricia’s latest video of Rockwell during his school’s “Western Day” went viral on social media. His charming beauty and the characteristic light blue eyes of an albino person grabbed the attention of many.
Patricia’s message of love, acceptance, and understanding is evident despite the difficulties of the voyage. The tale of this family inspires us all and serves as a reminder that individuality should be valued rather than disparaged.
The next time you come across someone special, stop to hear their tale and show them some love. We can make the world more compassionate and inclusive if we work together.
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