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.”
Celine Dion Faces ‘Unimaginable’ Medical Crisis: New Documentary Reveals All!
Celine Dion is giving fans an honest look at her life with stiff person syndrome.
In a new documentary, the famous singer experiences a scary medical crisis during a physical therapy session, and it’s all caught on camera.
In 2022, Dion revealed she had been diagnosed with stiff person syndrome. In the documentary, “I Am: Celine Dion,” she shares that she had been dealing with symptoms of this rare, progressive neurological disorder for 17 years.
“I need my instrument. And my instrument was not working. So we started to elevate the medicine,” Dion, 56, said after struggling to hit certain notes during her 2018 and 2019 tours.
Though she completed her 2018 tour, Dion had to postpone several dates from her 2019 tour due to the “common cold” before the pandemic shut it down.
Her tour resumed in 2022, but she had to keep canceling and rescheduling shows. It wasn’t until she announced her diagnosis that she officially canceled the rest of her appearances.
“I can’t lie anymore,” Dion says in the documentary. “From a sinus infection to an ear infection to whatever. Sometimes I would point my microphone toward the audience, and I would make them sing it. There are moments where I cheated and I tapped on the microphone like it was the microphone’s fault.”
LONDON, ENGLAND – JULY 05: Celine Dion performs live at Barclaycard Presents British Summer Time Hyde Park at Hyde Park on July 05, 2019 in London, England. (Photo by Samir Hussein/Redferns)
In the documentary, there’s a part where Dion shows a very personal moment. She’s lying on a massage table doing exercises for her physical therapy when her foot suddenly starts to cramp. Soon after, her whole body tightens up and she can’t move or talk to the people around her.
The camera keeps recording as another person from her medical team rushes in with a nasal spray called benzodiazepine. They give it to Dion, who’s in so much pain that she’s crying, even though she can’t move. It’s really hard to watch this part of the video.
Once the spasms have subsided – they typically last anywhere from 30 minutes to an hour – Dion is able to sit up and speak.
“Every time something like this happens, it makes me feel so embarrassed,” she says. “I don’t know how to express it, you know, to not have control over yourself.”
Her physical therapist speculates the attack was brought on by being “overstimulated” from an earlier singing session.
“If I can’t get stimulated by what I love, then I’m going to go on stage, and you’re going to put the pulse oximeter on me and turn me on my back?” she wonders.
Dion hopes that one day soon she’ll be able to return to the stage.
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