In January 2024, our family received devastating news that our 15 year old daughter was diagnosed with an autoimmune disease called Goodpasture Syndrome.

Initially, Emma came down with a virus, but it started getting worse. She fainted in the shower and was barely able to eat or drink without vomiting. We became very worried about her and rushed her to the Munster Community Hospital Emergency Room where initial tests found her kidney markers to be very high. She was sent by ambulance to Comer’s Children’s Hospital in Chicago where she was then admitted. The nurses drew a lot of specialized send out labs to go to the Mayo Clinic while we waited for Emma to be admitted. Once she was admitted, we were visited by many different doctors to try and figure out what was causing Emma’s kidney issues. The next step was to get a kidney biopsy .

After we were at the hospital for two days, the nephrologist called to say Emma’s results had come back from Mayo and she had tested positive for Goodpasture Syndrome. This was literally a ONE out of a million disease. There are just a handful of cases in the United States every year. It is caused by a virus that causes the body to make antibodies that attack the kidneys and potentially the lungs. The biopsy confirmed the diagnosis. Luckily, CT scans done on the lungs showed no damage had been done there. The treatment is a one time drug infusion and then 5 rounds of plasmapheresis to try and remove all the antibodies before more damage is done.

In the long term, we were looking at eight hours of dialysis every night to keep Emma alive until she could receive a kidney transplant. We were in the hospital for a total of four weeks to give time for the dialysis catheter to heal before Emma could have peritoneal dialysis at home. We were trained by the dialysis nurse on how to do this at home while Emma was in the hospital. The nausea and vomiting kept occurring with very few breaks after leaving the hospital.

Emma started the process of qualifying for the transplant waiting list in May and was officially approved to be on the list at the end of July. On August 6th, we received the preliminary call from the Transplant Coordinator explaining that there was a match. They wanted to confirm that Emma was in good health with no illnesses. The next day, we got the call to admit her that afternoon with the transplant to be done the day after.

At 8:00AM, on August 8th Emma went into surgery to receive her new kidney. The surgery went well and the kidney started working right away causing all of the nausea and vomiting to subside immediately. Emma stayed in the Pediatric ICU for monitoring. She was recovering very quickly and was discharged on August 13th after reviewing all the next steps and more than forty different medications she would need to take every day. Emma is nearly three weeks out from surgery and she has been doing really well.

As you can imagine, between trips to the hospital, medical bills, and everything associated with any situation like this, the financial cost are staggering and we need some help. Thanks in advance for any help you can provide. Our family appreciates all the help we can get.

A quick Emma update, she's doing really great and feeling great. Her labs she had done yesterday were all good and her creatinine is 1.1. It had gone up to about 1.5 2 weeks ago but they did a biopsy and it was just from not drinking enough fluids. She has to drink 3 liters a day of water now . But everything looks great now and she's slowly coming off some of the different medicines she was taking

Edit: I forgot to add she will be getting her stent removed next week as an outpatient procedure.

Update: Emma is still doing really well. She is officially scheduled to have her stent removal on October 29th up at U of Chicago. Hopefully it will be an easy procedure.