Originally Noah was diagnosed with Minimal Change disease, a type of Nephrotic syndrome at the age of 4, a month before he turned 5 and his second week of Kindergarten.
At first he was put on Prednisone which was doing well to put him into remission but he became dependent and so we added aND then switched him to Tacrolimus, an immunosuppressive drug which put him into remission for a year and a half before he relapsed again. After continual relapses, he eventually stopped responding to all medication and hasn't been in remission since he relapsed on May 31st 2017. On July 7th, 2017 he had a biopsy done and was unfortunately diagnosed with FSGS. Since diagnosis he rapidly progressed. By November 2017 he was already stage 3. Then by the end of December he was stage 4. In January he progressed to stage by and the end of January 2018 he had a peritoneal dialysis catheter put in and early February he began receiving dialysis.
Noah's whole life has been changed dramatically.
He went from a kid with a somewhat manageable disease, going to school, playing outside, having friends, being active to being severely sick, home schooled, lost his friends (most moved away), too exhausted to play outside, many many MANY hospital stays to the point he began to call home his vacation home. He's kind of lost a lot of his childhood and has been forced to grow up in such a short amount of time. He's a very strong kid, very sensible, and quite mature but also maintains his childlike sense of humor.
My biggest fear for him...
at first was the diagnosis of FSGS which came true, then was what if no medicines work which also came true, then it was dialysis, and now it's what my sons life is going to be like having a chronic illness, what if he gets sick because of complications with dialysis or sick because of all the immunosuppressive drugs he'll be on after transplant (only because he was sick a lot before because he caught everything it seemed) and him eventually needing another transplant later in life and having to go back onto dialysis.
Kidney failure is hard physically and emotionally.
I have seen the effects upon my son and did my best to support him. It's not an easy time by any means. Also, dialysis is a treatment and not a cure like some seem to think. Life can be hard hooked up to a machine, and I know we may meet those hardships eventually, but right now, we are enjoying the dialysis because not only is he home everyday, but he's more energetic and happier than I have seen in 6 months! But he can't stay on PD forever and that's something other people need to know. There's a limit to it.
Hope. Hope is all we have, it's all I have and I cling to it.
We still have options for Noah like transplant and so that leaves plenty enough room for hope. My children are my world, and I will find the strength to stand along side Noah no matter how much I'm hurting, because I know he has it harder. I have to be strong for him because he wasn't given a choice and he needs me and my strength, he needs the laughs and the smiles and the hopeful speeches I give to him. So I maintain a positive outlook because of hope and because of my son because I refuse to give up.
Noah has 2 sisters and a little brother. They have seen the effects and are very supportive of him. Family and friends support is very important for someone going through kidney failure. We also try to educate those we meet about his disease and try to bring about awareness to those around us.
Learn about the UC Davis Living Kidney Donor Program and donor process here
Fill out this Living Kidney Donor Interest form as a FIRST step here
Patient information you may need:
Name: Noah Mathis
Location: Auburn, Ca
Date of Birth: 9-19-2007
Donor Blood Type Needed: O, however Paired Exchange is an option which means you can donate to someone else in need while helping Noah receive a kidney as well.