Our Journey To Reality…

In March of 2016, the two proud parents, Vijish & Milu, and the big sister, Hannah, welcomed their newest bundle of joy, Matthew, into this beautiful world. In his early months, Matthew needed frequent visits to the pediatrician due to slow weight gain. By the age of 4 months, the family had been referred to several pediatric specialists to get an explanation on what was going on. Needless to say, all the tests came out negative with no apparent reasons.

Over the next year or so, Matthew was a happy kid. He reached milestones early, moreover, started walking in his seventh month! Whoever met Matthew loved his joyful spirit, lovingness, and happiness. He rarely visited his PCP, other than for routine checkups. He never even had a fever or cold… until he was 18 months old.

Things took a turn at this age, in August of 2017, Matthew started to get sick beginning with a high fever and cold, which led his parents to take him to the pediatrician, where they tested him for possible infections. His parents were asked to take him to the ER right away, where he was treated for a UTI. However, Matthew did not feel better. They had to take him to the pediatrician and urgent care every other day. His motor activities hit rock bottom, and he would cry and grunt, trying to breathe the whole day for almost a month, even while on his medications.

Matthew’s condition did not improve over the course. His grunts would bring tears to your eyes. That’s when his parents retook him to the ER for the second time that month. While the ER nurses were starting with routine blood and urine tests, the doctor on duty rushed to the room hearing Matthew’s grunts. He could sense that Matthew was going through some sharp internal pain. Immediately he ordered an ultrasound and X-ray to see what was going on.

HIS INSTINCTS PROVED RIGHT! THE RESULTS WERE SHOCKING! Imaging unveiled Matthew’s massively enlarged kidneys and renal system. In a few days, it became apparent that both of his kidneys were chronically affected and are running lower than 20% of its capacity. At that moment, THE PARENTS’ WORST NIGHTMARE BECAME A REALITY! The PICU doctors decided to move him to the tertiary care center for specialized care after a week of stabilizing him in PICU.

Matthew was very excited to have his MedAir transport to the new facility. Matthew and his parents met with the pediatric nephrology team, they delivered the asserting news that no parent wished to hear: “Both of Matthew’s kidneys are irreparably damaged and estimated to be working at about 15% capacity.” It seemed to be due to a medical condition, which went unnoticed since birth. They described medicines, diet regulations, dialysis, and a kidney transplant would be what we need to expect down the road. Matthew spent another two weeks at the new hospital with medications to further stabilize, daily blood work for vitals and renal functions. The entire experience was life-altering. It was hard for the parents to believe, how their kid got top of this condition to an irreversible state, without showing any specific symptoms.

The journey continued, the family kept track of everything from his renal diet, medications, regular follow-ups, and blood work for his renal values and vitals. He had to give up his favorite foods, and instead go with renal supplements and formulas. Like every other family, the family too desperately wanted Matthew to have a good quality of life. A diet-regulated environment, medications, Matthew’s management at home was going well. Every follow-up they were praying for things to be better. THEIR HOPE WAS SLOWLY BECOMING A WISH! The doctors decided to move forward with a kidney transplant for him as which was inevitable for his survival.

Matthew’s treatment got moved to the University hospital, which is 140miles away from where they live. Where he has undergone detailed kidney transplant evaluation and got listed as a transplant recipient. His transplant team detailed to his family about viable options and concluded a living related donor would be better for him. His mom, Milu, chose to undergo donor evaluation. God did hear their prayers. HURRAY!!! Matthew’s mom did indeed qualify to be his living donor.

Until now, Matthew had three surgical procedures to get him marching towards transplant, expecting a few more down the lane. Presently, he has a feeding tube attached directly to his stomach to supplement him with extra nutrition, which is given overnight through a pump. He also has to get multiple injections daily as part of his current treatment regimen. A lot of which is not covered by insurance.

Matthew continues to be such a loving and cheerful toddler, full of energy and joy, who brightens the days of his family and friends. He reminds everyone just how precious each day is.