Throughout the nine months of pregnancy, a mother’s heart is filled with anticipation, excitement, and a hint of doubt. When an expecting parent gives birth, they all want the child to be healthy and happy. Regretfully, our expectations are not always met by the way things work out.
Jennie Wilklow, of Highland, New York, was looking forward to meeting her daughter. Jennie and her spouse were overcome with happiness the moment they held their baby.
After multiple ultrasounds and check-ups with the physician, the results consistently showed a healthy baby.
This assurance put their minds at rest, and they had no idea that their darling Anna would be born with a disease that would permanently alter their lives.
At 34 weeks, Jennie had a C-section to deliver Anna. She peered into Anna’s eyes when the physicians placed the baby in her arms and felt an overwhelming sense of love.
Everything was going fine with their cute little one. However, Jennie couldn’t help but feel apprehensive about her husband when he came to visit her.
Jennie told Cafe Mom, “My husband’s silence scared me.” I pressed him for additional information as the doctor was leaving the room, and he just sat there looking shocked. With remorse, he added, “It’s bad.”
Upon meeting her gaze, her spouse said, “Jennie, she has the most beautiful soul.” Jennie did not know what such terms meant at the moment. Her mind was racing, but she had no idea what was wrong.
Anna suffered from an uncommon disease known as harlequin ichthyosis, which showed up as thick, severely fractured diamond-shaped plates. Jennie said to Cafe Mom shortly after giving birth, “Her delicate skin hardened as they desperately tried to help her.”
The dramatic splitting that followed the hardening left her slathered in open wounds throughout her body.”Anna prevailed despite the physicians’ concerns about her prognosis. She was quite beautiful,” Jennie proudly declared.
Unfortunately, there is no known cure for harlequin ichthyosis. The treatment involves regular showering and thorough skin moisturization, which takes consistent effort. I used to bathe her for hours every few hours, slathering her in Vaseline.
It might not seem like much, but it was one of the things I struggled with the most. I had visualized all the amazing clothes my child would have,” Jennie said.
She set up the “harlequin diva” Instagram page and started posting images of Anna there in an effort to raise awareness of this illness. Through her articles, she sheds light on the challenges faced by parents of children with harlequin ichthyosis on a daily basis.
“Anna won many people’s hearts and is the pinnacle of perfection in its purest form.” She has a natural capacity to carry out these mundane tasks. The world celebrates with us every time we achieve a new milestone, Jennie said to Cafe Mom.
She went on, “I now realize that my love for my daughter is the reason Anna was given to me.” Because we were destined to be together, we will work together to redefine what true beauty means to the world.
In addition to being beautiful in her own right, Anna is fortunate to have parents who will stop at nothing to ensure that she has a happy existence.
Let’s help spread the news about Anna’s story by inviting our friends and family to read this article on Facebook. Despite our differences, we can work together to raise awareness of and respect for the incredible beauty and power that each individual holds.
A teenager coughs and requests her father to bring her to the hospital. Within hours, the heartbreaking reality unfolds… Explore the comments for more details.
What does bravery really mean? Is it the bravery to hold on when you know the end is close and the battle you fought so hard is lost, or is it the capacity to face terrifying things?
For a sixteen-year-old girl, bravery meant standing by her father, who never wavered even under the most trying circumstances.
A man by the name of Tom Mitchell told the following tale.
This loving father remembered his daughter complaining that she didn’t feel well and requesting to be taken to the doctor because she thought she had a sinus infection.
Yes, sweetie, I’ll come get you tomorrow after school. If you’d like, we can have supper together afterward,” he replied.
The next day, the two did enjoy dinner together, but it was not at their preferred eatery. Rather, kids were having difficulty swallowing the food at Fairfax Hospital’s pediatric oncology unit. These father and daughter would have more than 450 meals there together, not to mention the hundreds more in the years that followed.
Instead of a sinus infection, his daughter had a massive tumor that had gone to her lungs and collapsed one.
It was a genuine struggle. Even though they knew it wouldn’t be simple, they were committed to fighting as a team.
Hodgkin’s illness, stage four, was Shayla’s diagnosis.
Tom tried to convey to them what it meant to be brave and withstand the trials and problems life placed in front of them by purchasing two sterling silver “feather” bracelets and placing one on each of their wrists.
Then he made three promises: he would stay at the hospital every night until Shayla was cancer-free; he would wear the bracelet until then; and he would persevere as long as she did.
Shayla’s cancer struggle dragged on for years, during which she had blood transfusions, chemotherapy, radiation, painkillers, and more medication. Her body could not take all of this, and as a result, her heart grew weak and a defibrillator had to be quickly implanted within her chest.
Shayla was getting ready for chemotherapy one day when she started screaming, “Help me, Dad! I’m shocked by it! ..I’m shocked by it.
Tom continued his explanation of what had occurred. I drew her in and gave her my strongest embrace. It almost blew her out of my arms and stunned her once more. But I resisted letting go. That’s exactly how I hugged her, fiercely as I could. As swiftly as it had begun, it stopped startling her, and we hurried to the hospital.
As it turned out, the device’s maker had to recall thousands of them because they were malfunctioning, and Shayla’s chest contained one of them.
More chemotherapy sessions, blood transfusions, a botched bone marrow transplant, and more uncomfortable sleepless nights ensued. But until the very last, Shayla never once considered giving up.
“How in the world was I meant to talk to my sweet kid about this? How would I ever have the courage to tell my daughter that she was going to die? There’s a quote I once heard that kind of captures my thoughts. “Can a guy who is terrified still be brave? He can only be bold at that moment. I had to have courage for HER! Of course, I did have that talk with her, and despite how unbelievable it may sound, it ended up being the most incredible, lovely, magical, and fantastic conversation I have ever had in my life. I sincerely pray you never, ever have to have it. Tom gave a portion.
“Dad, am I still brave?,” she murmured in his ear.
Then he met her gaze directly and saw into her soul. He was aware that she was beyond tired of battling and that it was becoming impossible for her, but he suddenly came to a chilling realization. She exhibited bravery for him rather than for herself.
Shayla tragically passed away a few days later, but her father will always remember her bravery and strength.
Shayla, rest in peace.
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