Help Harlow with a recent autoimmune disease diagnosis

Dustin and Kerri’s daughter Harlow started to feel ill on May 23rd. On the 25th, they were pretty concerned because she wouldn’t eat, complained of bad tummy pain, was running a fever, and her urine was brown. So they brought her to the ER where she was diagnosed with a UTI, ear infection, and dehydration. They gave her IV fluids and antibiotics and sent her home with an oral antibiotic. Her symptoms did not improve, and she started to swell in her face and extremities. She had gained 5 pounds in a week while not eating at all. Her urine started turning red, so 5 days later, they returned to the ER. This time they went to a pediatric ER where they ran more tests. They decided she never had a UTI and instead diagnosed her with post-streptococcal glomerulonephritis. She needed to see a pediatric nephrologist the following week. The pediatric nephrologist wanted to run more specific blood tests. Once they received those results, they found that her ANCA levels were 4x the normal amount, and she had ANCA vasculitis. The nephrologist said she needed to go to the hospital that night where she would be admitted for 3-5 days in order to receive IV steroids, and they would also perform a renal biopsy to confirm the diagnosis. On June 12th we had the tough conversation with doctors on whether to start a low dose 6 hour chemo infusion because her complement C3 levels are also very low. At that point the preliminary biopsy results came back without evidence of ANCA vasculitis, and the doctors are very confused now because they have never seen someone with such high ANCA levels and such low complement C3 who did not have ANCA vasculitis. They still haven’t received the full biopsy results, but all of her infectious disease testing is coming back negative, which is further confusing the doctors. Harlow needs to be seen by a rheumatologist and a nephrologist that specializes in vasculitis to truly rule out or confirm ANCA vasculitis or figure out what is causing this. Dustin and Kerri are going to work on getting Harlow care in Utah at Primary Children’s Hospital.

All donations will be used for medical expenses and/or travel to get Harlow the care she needs. Any support is greatly appreciated, whether it’s a donation, good thoughts, or prayers. Thank you!

Update 6/17/25:

Her biopsy is not showing ANCA vasculitis, but all of her bloodwork is pointing to an autoimmune disease. Her nephrologist in Las Vegas is sending over all of her records to a pediatric rheumatologist at Primary Children’s to establish care there.

We are so appreciative of all the prayers and support for our sweet girl ❤️