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.
Nurse believed that the young girl’s family was not aware of what she did daily
One of the worse things is cancer, even more so when it’s concerning children.
Jonathan and Shelby thought that their daughter, Sophie, who is two years old, was suffering from allergies. She was finding it hard to breathe and her doctor thought it might be asthma. Unfortunately, it was soon going to be evident that it was much worse!
The little girl, Sophie was set to have an allergy test a few day later, but she didn’t get to take that test.
One night she stopped breathing…
For every parent it’s a worse case scenario, Her parents ran to call an ambulance and within minutes they were on their way to the hospital.
It was just at that moment that doctors finally confirmed that Sophie had a condition that was much worse than just asthma or allergies. She had developed cancer, a T-cell lymphoma.
Sophie has since then spent many months in hospital having chemotherapy, even though fighting it hard the cancer spread.
The treatment affected her ability to talk, walk, use her hands to eat, her tiny body is going through the preparations for a stem cell operation.
Shelby is keeping a constant watch over her daughter and is by her side constantly. So many times Shelby forgets to take care of herself, it’s just the only thought she has, to get Sophie better!
Jonathan and Shelby have created a Facebook page to record Sophie’s fight against the disease, they want friends and family alike to have an easy method to see updates on how Sophie is getting along. The page is called Sophie The Brave.
It’s not just family that follows the page, there are over 12,000 people following Sophie’s fight.
There is one post on the page that has especially been welcomed. Moms with sick children will also relate, very likely, to what Shelby’s said.
Shelby wrote:
“I see you. I sit on this couch all day long and, I see you. You try so hard to be unnoticed by me and my child. I see your face drop a little when she sees you and cries. You try so many ways to ease her fears and win her over. I see you hesitate to stick her or pull bandaids off. You say ‘No owies’ and ‘I’m sorry’ more times in one day than most people say ‘thank you’..”
“I see all of those rubber bracelets on your arms and wrapped around your stethoscope, each one for a child that you’ve cared for and loved. I see you stroke her little bald head and tuck her covers around her tightly. I see you holding the crying mom that got bad news.I see you trying to chart on the computer while holding the baby whose mom can’t-or won’t be at the hospital with her.”
“You put aside what’s happening in your life for 12 hours straight to care for very sick and something’s dying children. You go into each room with a smile no matter what’s happening in there. You see Sophie’s name on the schedule and come to check on us even when she isn’t your patient. You call the doctor, blood bank, and pharmacy as many times as necessary to get my child what she needs in a timely manner. You check on me as often as you check on her. You sit and listen to me ramble for 10 minutes even though your phone is buzzing and your to do list is a mile long.
“I see you. We all see you. No amount of snack baskets or cards can fully express how appreciated you are. You are Jesus to us every single day. Our children wouldn’t get what they need without you. Moms like me wouldn’t feel sane or heard without you. You save our babies and we couldn’t do this without you.”
Shelby got 26,000 likes on her post, its easy to see and understand why, all the amazing people at the hospital, the nurses, all deserve to be thanked and recognized for their great work.
Let’s all hope and pray that Sophie makes a fast recovery, and as it happens the family got some really great news, Sophie’s cancer is almost all gone!
Let’s also share Shelby’s words about the nursery and hospital staff so that more and more people can hear about the amazing work they do.
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