{"version":"1.0","provider_name":"COTA for Oliver&#039;s Kidney","provider_url":"https:\/\/cota.org\/cotaforoliverskidney","author_name":"danielle","author_url":"https:\/\/cota.org\/cotaforoliverskidney\/author\/danielle\/","title":"Our Story","type":"rich","width":600,"height":338,"html":"<blockquote class=\"wp-embedded-content\" data-secret=\"hrryVj07w1\"><a href=\"https:\/\/cota.org\/cotaforoliverskidney\/our-story\/\">Our Story<\/a><\/blockquote><iframe sandbox=\"allow-scripts\" security=\"restricted\" src=\"https:\/\/cota.org\/cotaforoliverskidney\/our-story\/embed\/#?secret=hrryVj07w1\" width=\"600\" height=\"338\" title=\"&#8220;Our Story&#8221; &#8212; COTA for Oliver&#039;s Kidney\" data-secret=\"hrryVj07w1\" frameborder=\"0\" marginwidth=\"0\" marginheight=\"0\" scrolling=\"no\" class=\"wp-embedded-content\"><\/iframe><script type=\"text\/javascript\">\n\/* <![CDATA[ *\/\n\/*! This file is auto-generated *\/\n!function(d,l){\"use strict\";l.querySelector&&d.addEventListener&&\"undefined\"!=typeof URL&&(d.wp=d.wp||{},d.wp.receiveEmbedMessage||(d.wp.receiveEmbedMessage=function(e){var t=e.data;if((t||t.secret||t.message||t.value)&&!\/[^a-zA-Z0-9]\/.test(t.secret)){for(var s,r,n,a=l.querySelectorAll('iframe[data-secret=\"'+t.secret+'\"]'),o=l.querySelectorAll('blockquote[data-secret=\"'+t.secret+'\"]'),c=new RegExp(\"^https?:$\",\"i\"),i=0;i<o.length;i++)o[i].style.display=\"none\";for(i=0;i<a.length;i++)s=a[i],e.source===s.contentWindow&&(s.removeAttribute(\"style\"),\"height\"===t.message?(1e3<(r=parseInt(t.value,10))?r=1e3:~~r<200&&(r=200),s.height=r):\"link\"===t.message&&(r=new URL(s.getAttribute(\"src\")),n=new URL(t.value),c.test(n.protocol))&&n.host===r.host&&l.activeElement===s&&(d.top.location.href=t.value))}},d.addEventListener(\"message\",d.wp.receiveEmbedMessage,!1),l.addEventListener(\"DOMContentLoaded\",function(){for(var e,t,s=l.querySelectorAll(\"iframe.wp-embedded-content\"),r=0;r<s.length;r++)(t=(e=s[r]).getAttribute(\"data-secret\"))||(t=Math.random().toString(36).substring(2,12),e.src+=\"#?secret=\"+t,e.setAttribute(\"data-secret\",t)),e.contentWindow.postMessage({message:\"ready\",secret:t},\"*\")},!1)))}(window,document);\n\/\/# sourceURL=https:\/\/cota.org\/cotaforoliverskidney\/wp-includes\/js\/wp-embed.min.js\n\/* ]]> *\/\n<\/script>\n","thumbnail_url":"https:\/\/cota.org\/cotaforoliverskidney\/wp-content\/uploads\/sites\/6612\/2025\/08\/Oliver-Stevens-4-scaled-e1756490638191.jpg","thumbnail_width":1920,"thumbnail_height":2130,"description":"Our story began in fall of 2021 at Oliver\u2019s routine kindergarten check up. His bloodwork came back a little abnormal after drawing it twice. We were then referred to a Nephrologist. Oliver was showing signs of kidney disease but some things were coming up abnormal. His doctor was for the most part confused why he was not spilling protein into his urine when he should be. We were trying to understand and figure out the cause of the kidney disease which was diagnosed as stage 3A at that time when he was 5. Oliver ended up having a kidney biopsy which showed he has scar tissue forming in the filtering parts of the kidneys. After all the bloodwork and test done by his Nephrologist Oliver was put on medication to slow the progression and inflammation\/scarring of the kidneys, and his high blood pressure. He also had to take medication for a super high parathyroid. While we were under great care through his Nephrologist I decided to seek out a second opinion at Mayo Clinic in Minnesota because my grandmother has such a great experience with them diagnosing her with a rare brain disease. At the Mayo clinic we saw a team of doctors, and did labs all in one day. The nephrologist right away said let's do a genetic test that he believes would come back as Nephronophthisis. We ended up hearing back within a couple months, and the genetic testing did come back as just that. Nephronophthisis or shorter is NPHP-1 is a rare inherited genetic disorder that causes cysts and scarring and is the most common genetic cause of kidney failure in children and young adults. NPHP can vary case by case and may affect other parts of the body like the eyes, liver, bones, and central nervous system. After this diagnosis we were sad but relieved to understand the reasoning behind the kidney disease. All his symptoms finally made sense. Excessive thirst, bed wetting, leg and body fatigue, behavioral issues, and how he is so much shorter than his classmates his age. He is in the 2nd percentile in height and in the process of seeing an Endocrinologist and possibly starting growth hormones. Oliver had been stable for a couple years sitting at stage 3A until last year's summer time. His bloodwork had shown a decrease in kidney function which was probably due to one of his medications called ramipril, the one that is supposed to help with blood pressure and help lessen scarring of the kidneys. He was then pushed into stage 4 sitting at about 20-25% kidney function. We stopped the medication, and we began the process of talking to a transplant team at Lurie\u2019s in downtown Chicago in October of 2024. Mom and Dad, and a family friend all got tested to see if we were matches. We ended up all being matches for Oliver. Moving forward towards a living donor Oliver\u2019s father Wayne will be his donor and Oliver\u2019s mom will be taking care of Oliver after the transplant with medications and everything else in the hospital and at Ronald Mcdonald in Chicago. Both Mom and Dad will both have to take quite a bit of time off of work after transplant and commute frequently to the city for years to come. Unfortunately with Oliver\u2019s genetic disorder causing the kidney disease this new kidney will not fix the kidney disease, he will need possibly 1-3 more transplants in his lifetime. Oliver will be taking immunosuppressants the rest of his life so his body does not reject his donor kidney. With taking these medications he will be more susceptible to diseases, getting sick and skin cancer\/sun. We are hopeful that Oliver will remain stable and at stage 4 for as long as possible as he is mostly a happy healthy looking 9 year old kid. Oliver is full of joy and has a wonderful personality but with this kidney disease he does have his struggles with his mental health and managing some of his everyday symptoms from his kidney disease and genetic disorder."}