Help Lillian Kettlewell fight GPA

Lillian has been diagnosed with an extremely rare auto-immune disease called Granulomatosis with Polyangiitis or GPA. This is a type of vasculitis and attacks different organs of the body.

Lillian’s symptoms began in June 2023. She was wheezing and having severe trouble breathing during normal activities. She saw doctors at UW Madison Childrens hospital who determined that she had swelling in her sub-glottis (the area below the vocal cords.) They injected steroids and performed a balloon dilation procedure and surgical biopsy. This procedure did help for a short period but did not produce any answers as to why she had these symptoms.

In February 2024, Lillian’s symptoms returned, and we met with the Pediatric ENT specialist at the Childrens Hospital. They decided on another treatment plan of steroid injections and a surgical biopsy. But before that surgery happened, Lillian rapidly developed more concerning symptoms at home. She was lethargic, pale and feverish with frequent vomiting. On March 27th labs confirmed her kidneys were failing and her blood count was very low. We rushed her to Madison where she was admitted to the Childrens Hospital.

Lillian spent 8 days in the hospital, being incredibly patient and strong while an array of specialists treated her. It was

the worst week of our lives. Every day we hoped and prayed for her kidney function and hemoglobin count to improve. It gradually improved just enough so they could release her.

Her doctors have decided to treat her with various medication and massive doses of steroids. She is being treated with Erythropoietin

(EPO) and a cancer drug Rituximab, which is given intravenously over the course of several hours at the hospital in Madison. If her hemoglobin doesn’t improve, we will have to continue to give her very painful EPO injections

Lilly has a kidney biopsy scheduled for the 26th

of April, in addition to the sub-glottis biopsy that was previously scheduled.

Our family is forever changed by this diagnosis. Lilly will be on various medications to control her immune system for the rest of her life. If left untreated, this disease will continue attacking her organs including eyes, ears, lungs and heart. Our new “normal” now involves taking off work for weekly drives to Madison and back. Our strong, brave girl has gone through more stress

and pain than we have in our entire lives. thank you for your support through these uncertain times!