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Nina Pearl's Story is just beginning.

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On February 9, 2024, a three month old little girl with auburn hair went to the pediatrician with either a milk allergy or a tummy bug. She came out with leukemia.

Nina Pearl Ziegler is what one thinks of instinctively when they hear the words "beautiful baby." Please take a second for your own personal image of that. You're probably not far off. Her folks, Angelina and Adam, were forced to get used to people telling them this fact constantly. Admittedly? They remained skeptical, as all children are rightly perfect in the eyes of their parents. However, one can only hear the truth from friends, family, neighbors, letter carriers, veterinary assistants, bank tellers, and everyone else also shopping at Target, before the point is driven home.

Nina Pearl was gifted with doey brown eyes that are surrounded by long eyelashes which are impossible not to comment on. They are accompanied with the previously mentioned auburn hair, and the correct amount of tiny rolls in her arms and legs. Nina has a smile that she will give up freely to the right person. A smile which features just one cheek dimple, as two would be most likely too much to handle for the common human psyche.

With Nina, the symptoms of her disease came on quickly. They manifested over the course of only 5 or 6 days. In that short time she had a total of 4 spit-ups that were possibly (?) worth noting. She was a touch (?) more fussy. She was also a bit more tired, lethargic, and uninterested in giving up her beatific smiles as often as usual.

She simply didn't seem that sick.

After a quick consult over the phone with her sincere, and more than able pediatrician, it was assured that it was most likely a small matter. Nina Pearl went in to get an unscheduled, but non-emergency check up. After a quick discussion of recent diaper trends, followed by the discovery of a hard lump in her side (later to be found out to be an enlarged spleen due to the cancer in her blood), she would be urgently sent to Johns Hopkins All Children's Hospital in St Petersburg, Florida.

She was brought in. Multiple doctors did multiple tests. Her blood was taken. Then more blood. Then just a touch more. Adam and Angelina were told that her initial test results 'made no sense' at first glance. This came from medical professionals who should know things at such a glance. Nina was admitted. Nina's parents began to feel a tiny amount of the eventual weight. Fear is too tiny of a word. Enough said about that. The initial confusion was no fault of the medical staff, but of a seemingly impossible issue. You see, the normal white blood cell count in the average person floats from 5.7 thousand to 17.70 thousand. The best guess that could be provided was that this baby was showing 1.4 million. It was impossible to be certain, as the machines that count these numbers were incapable of registering a count that far out of the normal scope. The staff was forced to dilute the samples multiple times, and attempt to count the cells manually through a microscope. Her hemoglobin counts (the part of your blood that takes oxygen to all organs) would also be found to be under 1/2 of what it should be.

Nina is now diagnosed with Infant Acute Lymphoblastic Leukemia (ALL). Nina's case is later found to be exacerbated by a rare genetic anomaly, making her specific disease and situation quite rare. One case seen in 18 months, rare.

Over the course of the next twelve days of her sub-one-hundred -and-twenty-day existence, Nina Pearl would be given multiple blood transfusions, platelets, an endless amount of maintenance fluids, as well as various other drugs. She would gain almost 30% of her body weight just in administered fluid. She would become so swollen in her abdomen, face, neck, and limbs as to be unrecognizable from previous pictures of her. She would be fed her mother's milk through a feeding tube, when necessary. She would undergo a surgery that would implant a central line in her femoral artery. Because of this surgery, her right leg would now have a port to more easily deliver medication, and take blood samples. This would consequently result in a blood clot in that same leg, which remains a constant threat to this day.

She would be scared. She would be confused. She would cry. She would be in pain. She would plead for it to stop. So would anyone.

Upon writing this story? In a sick twist of hope, Nina looks and acts much like she did right before February Ninth. The fluid in her body, while not completely dispelled, is mostly gone and can only be seen around her enlarged feet. Her hemoglobin count is much closer to par. While her white blood cell count is ten fold lower to where it was, it is still ten fold higher than the normal amount, making it too dangerous still to administer a spinal tap to determine if her nervous system is currently at risk. Her blood clot remains. That said, Nina will give up a huge smile for her Mama, her Papa, or one of her favorite nurses. She likes playing with the staff in the Occupational or Physical Therapy teams. She will cry when she is hungry. She will amaze with her ability to fill a diaper. Today was a good day. Today she is now 'well enough' to be poisoned with the start of her cure.

Today starts Nina's full and very aggressive course of chemotherapy. The days will most likely go far worse. There are four major drugs, the names of which are unimportant for the sake of this story. The side effects are known to anyone who has been through this, but some bear repeating. Hair loss, confusion, diarrhea, vomiting, mouth sores, inability to eat, joint pain, loss of energy, heart attack, kidney failure, change in vocal ability, loss of smile, pain, inability to remember how to laugh, ability to start to give up, etc. Moving forward, anyone changing one of her diapers must wear gloves, as the drugs in her system are too toxic to touch the skin of the uninfected, even through her waste.

These drugs are being given to someone too young to hold her head up well, too young to safely sleep with a blankie, and too young to drink water. There are other possible effects. This author refuses to write them. This is the best science has today. This is cancer. This poison is hope.

Every child deserves their own goofy version of laughter. Every sick one deserves the chance to find their laughter, again. This child's name is Nina Pearl Ziegler. You can call her Nina, Nina Pearl, Boo-Boo Lady, Biggles T, Whisket (the Wiggle Biscuit), or Miss New Bootie. (That last one, especially during her Mama's epic dance parties) Please spare her a hope, a thought, or a prayer if that's your thing, tho it is not our own. I'm her Papa. Myself and her Mama would really like her to come home soon.

Thank you for reading. Thank you for donating.

*A portion of the proceeds will be donated to the Johns Hopkins All Children's Hospital Foundation.
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Donations 

  • Anonymous
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  • Brittany Sandefur
    • $20
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  • Whitney Harvey-Bluher
    • $35
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  • Angela Moya
    • $1,000
    • 19 d
  • Anonymous
    • $300
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Fundraising team (5)

Andrew Ziegler
Organizer
Lockport, IL
Angelina Moya
Team member
Adam Ziegler
Team member
Larry Smith
Team member
Ilene Ziegler
Team member

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