Help Eli fight kidney disease

When Eli was 4yrs old, he had gotten pink eye and a rash that spread across his body; he was hospitalized for 8 days and was diagnosed with a rare disease of HSP in March 2019.

From 2019 until 2021, the rash would come and go without warning. He was put on medication, an Immunosuppression, costing about $200 a month and needed to be made in a particular pharmacy; due to the nature of the medication, it had to be made in a closed lab. Only specialty pharmacies can; this was in hopes to help with the HSP, hoping that the HSP would not affect his kidneys later on.

Over that time, he endured a skin biopsy without sedation to confirm the HSP. He later had a kidney biopsy that confirmed HSP in the kidneys and kidney disease. Every month to every other since 2019 he has had to go for repeated urinalysis tests to keep close eyes on the kidneys. In addition, every 3 months, he has had to do bloodwork to watch his kidneys and kidney function. This is not including several ultrasounds and many other specialty doctors ranging from Dermatology, Nephrology, Gastroenterology, and Rheumatology.

Now being 8yrs old and recently hospitalized 2 times this year, being transferred from one hospital to another in an ambulance. Unfortunately, the doctors haven't had many answers for us on what we can do to help him. They believe his kidney disease and the HSP has progressed into IGA Nephropathy. However, he also keeps undergoing episodes of extreme abdominal pain and fever.

Sadly every time Eli gets sick, he will urinate blood, and it causes more damage to his kidneys and abdominal pain.

At one point, I signed papers in the ER for him to undergo emergency surgery to remove his appendix. Then he was transferred out, and they decided not to do the surgery, and GI doctors and Kidney doctors are stumped on what to do.

After several hospital visits and misdiagnoses, we need to take him to Boston to see the kidney and Gi specialists there who are more familiar with these issues to find some treatment, hopefully.

We have an appointment for October 13th, so please help us get him there and help continue treatment and testing if you can. If you can donate, share and/or pray we greatly appreciate everything.

Despite everything Eli has endured and the continued doctor visits, he remains sweet, kind and an amazing brother. He still loves playing baseball for crystal lake baseball, being a cub scout, boxing, wrestling, swimming, playing video games and hanging out with his friends. He is an inspiration; he doesn't let his condition get in the way of being a typical happy and silly kid.

Even though some days are hard, and he breaks down to cry and wishes he could be like his friends and worries about money when he gets sick, we work through it together, and he amazes me every day.

We set up a gofund.me for a trip to Boston to see the #1 kidney specialist in the US. We made the trip in October 2022 and now we are trying our best to keep fighting his battle and also make others aware of kidney disease in kids and HSP, he will have many more continued doctor visits with specialists in kidney, rheumatology,GI and a therapist for his mental health, being the "sick" kid takes it's toll.

Boston did help in so many ways, mentally, emotionally, and we learned so much more about his medical situation. The doctor there will continue to follow with his treatment and advise his doctors here so that hopefully we will not need to travel back any time soon.

We appreciate all that everyone is doing and have done to help this amazing kid in his journey and for all the continued support.