Z turned 15 years old in March, 2025. She needs urgent treatment for her kidneys, which will require extensive travel to the nearest pediatric specialist - a full days drive away. We will need to leave the day before all appointments, and travel home the day after the last appointment/test. 

Z is an Ambassador for 4-H, and has been an avid fundraiser and contributor to the 4-H program. She is passionate about helping others and enjoys community service. She  has also spoken to Members of Congress many times as a rare disease advocate. Now she needs the Community to help her.

Z was born with a rare disease called XL-HED. Genetic testing shows that Z’s particular strain of XL-HED disrupts the p.Arg156 amino acids in AED and is pathogenic. She doesn’t have the ability to sweat to cool her body and has struggled with overheating her entire life, among other issues common with HED. She’s used external sources to help cool her body, as well as drinking fluids. When she overheats, nausea and vomiting follow, causing dehydration. Her rare disease and struggles with overheating (and it’s effects) may have contributed to the challenges she’s facing with her kidneys. 

We just found out in March 2025 that Z currently has bilateral kidney stones, WBC (UA) 15/HPF, RBC 1884/HPF, Protein 1+, and Blood 3+. Care for her kidneys is urgent. Our first appointment with her specialist is immediate. We start traveling back and forth in April, 2025. Our need for your support is urgent and quite a shock. 

We need your help to cover the costs of food, travel, and hotels. We also need assistance to kennel our parrots while we travel (with their avian veterinarian). We hope and pray you will join us to help Z’s kidney health improve and heal. Anything will help. We expect the cost of travel to be significant. We were advised to raise $12K.

Update 4/8/2025 - Thank you to those of you who are supporting Z’s kidney journey. Your generous donations have made it possible to reserve a room for the first night of our upcoming trip and cover a portion of the gas. We do not have a travel fund to cover these expenses. Every donation is helpful and we are grateful for each and every one of you who shares and/or donates to Z’s fund. Thank you for your prayers of healing, health, and safe travels, as well.

4/9/2025 - In one day, we raised over $1K and lifted a huge weight off our shoulders. We now have enough money for three days hotel and gas. Thank you so much to all of you for sharing, donating, and your prayers.  

Z eats a mostly neutropenic diet, and we give her a supplemental shake before she gets up every day to help with caloric intake. She struggles to maintain weight. Despite gaining weight, her BMI is 15-16%, depending on the day. She had a bowel resection at birth and has “short gut syndrome” that complicates food absorption. As a result of the bowel resection, she also has an “upside down gut” with a high amount of bad bacteria and yeast, which complicate eating further. The good bacteria necessary to break down and digest many foods is missing. We have been working on turning around her digestive system for many years. That said, feeding Z is quite involved and expensive. We won’t know until we get there exactly how costly it will be, and will travel with coolers from home. However, we expect to spend a significant amount of money on food. We traveled last week out-of-state for her club foot and were shocked by the cost of food.  We do not have a budget to cover the cost of food on the road, which is shockingly high at the moment. Please continue to share the GoFundMe to help cover expenses. 

This is a tough time in our economy to need to travel for medical. We appreciate each and every one of you who reads, shares, prays, and/or donates very much.