EJ, 8, needs a kidney

EJ who is 8 years old haa been battling kidney disease since before he was born. He only has one kidney (the other never formed) and it never worked properly. He has been through numerous surgeries and procedures trying to get his kidney to last as long as it could.

Unfortunately after a failed surgery in 2021, his kidney function began to decline and in early 2022, we began looking for a living donor.

In early 2023, someone donated a kidney in EJs name which got him a spot on the national registry as part of the paired donor exchange program. His voucher was activated this summer when his potassium levels dropped so low that he was hospitalized in fear it could cause him to have a heart attack. He spent a total of 14 days in the hospital (two 5 day inpatient stays) between May 2023 and June 2023. Then in July we had outpatient dialysis training for a week.

He began in home dialysis the week of July 4th. He is hooked up to a machine 7 to 8 hours a night, every night, so the machine can do what his kidneys can't.

Hopefully, we find a match soon because dialysis is very hard on him. He has to be very careful with the catheter in his belly. There are many things he can't do. He hates being hooked up to a machine every night and it is physically draining on him.

He still goes to school and sees his friends when he feels up to it, but he has his days when he is just exhausted also.

We are raising money for a few things. The first is that the EJ mobile (our van with the giant decal on the back) needs some repairs, such as brakes, tires and maintenance.

We have 2 medical bills that I have been fighting for over a year that his insurance did not cover that we need to pay.

We get 6 or 7 medical supply deliveries a month and it totals to anywhere from 50 to 60 boxes. We need to get shelves or some types of storage system to put everything. Since this does seem to be a lot more long term than we originally had hoped. Right now they are taking over EJs bedroom and it is a nightmare. The dialysis fluid has to be temperature controlled so the garage is not an option and we do not have a basement.

Lastly, when EJ does get a kidney, we are going to need to cover travel costs and other expenses while he is in the hospital and saving anything right now is just not possible. He goes to the doctor multiple times a month and right now we are redoing transplant evaluations.

Honestly, anything would help.