Hello my name is Nicole and I am posting on behalf of my 15 year old son Levi. He has been really sick off and on for the last couple years and has lost over 80 pounds. We have currently been in Helen Devos since last Wednesday with no sure release time frame.

He was diagnosed with Autosomal Resessive Polycystic Kidney Disease and we just received a call from the genetics office that the genetic mutation he has is so rare their is hardly no testing or treatments yet. So we have been asked to let them do testing to further help treat him. I was tested myself today to see if I have the same genetic mutation per request of the genetic Dr.

I am asking for donations to help cover the genetics testing that insurance doesn't cover and for helping me get back and forth to the hospital to be with my son. Anything helps even if it's just a share.

Thanks for reading our story. I will continue to post updates as I get them.

Update: Levi sees the kidney Dr on 6/13 and has an ultrasound to measure they existing cysts to see if they have grown or if new ones have presented. He continues to lose weight and throw up everyday. I have left my job to make sure he has someone there. He now takes 8 medicines a day now for kidneys, blood pressure and vomiting. Blood pressure needs to be checked 3 times daily and if over to high we have to go to Devos due to it causing irregularities in his heart rate. Please share and donate if you can everything helps

UPDATE 6/13/25

We have been readmitted to Devos Children's hospital. He has lost 22 pounds since we left not even 2 weeks ago. The kidney Dr is now involving the GI team due to what's going on with his nutrition and weight loss. Talks of putting the feeding tube back in have begun.