Brain Surgery for Rosie Byrd

As most of you know, my granddaughter, Rosie Harper, was diagnosed with Chiari Malformation I, Papilledema, and Irregular Intracranial Hypertension (IIH) after a week long state at Vanderbilt Children’s Hospital in January 2020. What this means is that Rosie has extra pressure in her skull (Irregular Intracranial Hypertension), which exerts pressure on her optic nerves, and it is called Papilledema. The risks of Papilledema are optic nerve damage, blindness, blurred vision, and serious brain swelling. The risks of IIH are migraines, weakness, poor coordination, dizziness, and sometimes GI symptoms such as vomiting and diarrhea. The way this pressure is usually relieved is by doing a spinal tap and withdrawing some of the fluid. However, Rosie is not a safe candidate for this procedure, because she also has Chiari Malformation I. Chiari Malformation I is basically when the brain is too big for the skull to contain, so it begins to shift out of the base of the skull towards the spine/spinal cord. The risks that come with Chiari Malformation I are tethered cord, syrinx, numbness of hands or feet, excessive migraines, weakness, nerve and muscle damage, neurological damage, and paralysis. So in a nutshell, most people with IIH can get a spinal tap, and that relieves the pressure. But since Rosie is a special case, they cannot do this spinal tap because it is too risky and are hoping to avoid any invasive procedures at all costs. So they started her on a medication called Diamox. My granddaughter has been taking a diuretic two times a day, since she was diagnosed at 5 years old. While the diuretic adds the risk of overheating and dehydration, it was working well for a very long time. Until it didn’t. Ever since November, Rosie has missed 30+ days in school, and is at risk of being withheld a grade. She has migraines that will make it nearly impossible for her to get out of bed, random spells of blurred vision and dizziness, nausea, vomiting, exhaustion and weakness, and feelings like her “head is on fire”. Katie has served in the military for 13 years, but now that she works as a Federal Technician, she cannot use her military medical insurance, and has to pay out of pocket. Between multiple visits to multiple departments at Vanderbilt Children’s Hospital, medication, missing work, insurance deductibles, co-pays, glasses (her prescription changes regularly), extra learning aids to get her back on track, special diets for the GI symptoms, and now Rosie will need a tutor, the financial burden has been quite the load on both of her parents. If you know Jeff and Katie, they work hard and always have, but life has happened to them in a big way. And more importantly, to Rosie. Since the medication hasn’t been able to relieve the symptoms, her medical care team is beginning to lean towards surgical intervention. Rosie will need excessive care and have to stay consecutive days in the ICU if they decide to move forward with surgery. We are praying that this doesn’t have to be the case, but as usual, we are leaving that in God’s hands to do whatever is best for Rosie. This decision should be made in June. The cost for optic nerve and brain surgeries will be an astronomical cost on these parents that have already carried such a heavy financial burden. Then add missing work and the cost of tutoring on top of that, and it’s a tough spot. Rosie always needs prayers, but if you are able, we are hoping to raise money for Rosie’s medical expenses, just to help her parents breathe and take care of her without worrying about the financial aspect. Every penny helps. Any donation you make will be used to pay off medical bills Rosie has already accumulated, tutoring services, and the cost of multiple risky surgeries. We appreciate the time you took to read this family’s story and are beyond grateful for anything anyone is capable of doing with all of our hearts. Pray for Rosie. Pray for Natalie. Pray for Jeff. Pray for Katie. God Bless.