Zoe's Story (written by her mom, Rachel)
Zoe was hospitalized right after her 1st birthday with a fever of 105 and seizures. We were told she had very low white blood cells, and 0 neutrophils. This means her marrow was not producing the necessary things to fight infections. Doctors were hoping it was due to the virus she was fighting.
2 weeks later, and several terrifying words later, Zoe was diagnosed with a rare disease called severe chronic neutropenia. In the beginning we hoped this would be something she would grow out of. Two years later (present) and countless blood tests and hospital stays, we have come to the conclusion this will be a for life illness for Zoe.
While we are not 100% sure what is causing the neutropenia, they can and will no longer call it “benign” meaning it will not turn to cancer someday, or autoimmune. Coupled with her failing marrow, Zoe suffers from many GI issues including, gastroparesis. This means her intestines are basically paralyzed sometimes and the food she eats empties very slowly. Zoe gets bowel obstructions frequently. Zoe eats food by mouth when she feels like it, but her main source of nutrition comes from a g/j feeding tube. Her formula gets fed directly into her small intestines.
Zoe frequently visits sparrow and surrounding specialized hospitals for check ups and since September 2020, Zoe has received infusions of bisphosphonate for her severe bone pain. In late 2020, she was diagnosed with Von Willebrands Disease. This means her ability to clot is less due to lack of clotting protein in her blood. Zoe received a port to help give her veins a rest and allow easier access for the numerous blood draws and infusions she undergoes.
Zoe is a brave little warrior and we are so proud of her.
Zoe was hospitalized right after her 1st birthday with a fever of 105 and seizures. We were told she had very low white blood cells, and 0 neutrophils. This means her marrow was not producing the necessary things to fight infections. Doctors were hoping it was due to the virus she was fighting.
2 weeks later, and several terrifying words later, Zoe was diagnosed with a rare disease called severe chronic neutropenia. In the beginning we hoped this would be something she would grow out of. Two years later (present) and countless blood tests and hospital stays, we have come to the conclusion this will be a for life illness for Zoe.
While we are not 100% sure what is causing the neutropenia, they can and will no longer call it “benign” meaning it will not turn to cancer someday, or autoimmune. Coupled with her failing marrow, Zoe suffers from many GI issues including, gastroparesis. This means her intestines are basically paralyzed sometimes and the food she eats empties very slowly. Zoe gets bowel obstructions frequently. Zoe eats food by mouth when she feels like it, but her main source of nutrition comes from a g/j feeding tube. Her formula gets fed directly into her small intestines.
Zoe frequently visits sparrow and surrounding specialized hospitals for check ups and since September 2020, Zoe has received infusions of bisphosphonate for her severe bone pain. In late 2020, she was diagnosed with Von Willebrands Disease. This means her ability to clot is less due to lack of clotting protein in her blood. Zoe received a port to help give her veins a rest and allow easier access for the numerous blood draws and infusions she undergoes.
Zoe is a brave little warrior and we are so proud of her.