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.”
The Basketball Court Girl: Her Journey Unfolds at 21
“The Basketball Court Girl: A Fate Decided at 21”
Tsyan Hongyan’s story is one of perseverance and hope, serving as a powerful inspiration to people worldwide, especially those with disabilities. Her life demonstrates that no matter the challenges, it’s possible to achieve greatness.
Tsyan lost both of her legs at the age of four in a tragic car accident. Her family, unable to afford prosthetic legs, had to find a way for her to adapt. Initially, her parents carried her, but her grandfather came up with a creative solution: he cut a basketball in half and placed Tsyan inside it, giving her sticks to help her move around.
This unique method of mobility caught the attention of many after a video of Tsyan went viral on social media. She quickly became known around the world as “the basketball girl.”
Tsyan’s determination was nothing short of remarkable. Despite her disability, she found a way to get to school on her own using this improvised “basketball transport,” although the journey took her an hour instead of the typical seven minutes.
At the age of eight, the government stepped in to provide Tsyan with prosthetic legs. With these new legs, Tsyan was able to take her first real steps toward independence.
Her dream, however, extended beyond walking. Tsyan had a deep love for swimming, and with her new prosthetics, she was finally able to pursue it fully. Despite facing many challenges, she set her sights on competing in the Paralympics, a goal that took years of effort and determination to achieve. Her hard work paid off in 2016 when she fulfilled her dream of participating in the Paralympic Games.
Today, Tsyan Hongyan is a celebrated swimming champion, with numerous medals to her name and worldwide recognition for her achievements. Her story reminds us that with perseverance, anything is possible. If Tsyan could overcome her challenges and find success, anyone can.
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