old from Autosomal Recessive Polycystic Kidney Disease (ARPKD). Donation information:
The Travis Mears Memorial Foundation
363 East New Lenox Rd
Pittsfield, Ma 01201
TravisMears_fdn@hotmail.com
Our beautiful son Travis Wayne (Trav Cakes) was born on September 12, 2013 with ARPKD. We were told that he would not make it past his first night, but he pulled through. We were then told on and off again for the next few days that he wouldn't make it. He had both his kidneys removed on his sixth day of life! They weighed in at a whopping 2.2 pounds! Seeing as he was only 8lbs 6oz at birth, you can imagine it was like Trav gave birth to twins. Once they were removed his lungs were able to expand. You see, we were told Travis had Pulmonary Hypoplasia, a disease that is caused by having little to no amniotic fluid for the baby to ‘inhale’ to form their lungs. I was convinced he didn’t have it, but in the first few days it was hard to prove different. After his kidneys were removed his health rapidly improved. Travis came off the breathing machines and started Peritoneal Dialysis. It seemed there was nothing he couldn’t beat. We had expected Trav to be in the hospital for months, as it turns out, Trav had other plans. We packed up our car and headed home on October 30. It took two SUV’s to bring everything from the hospital home and the medical delivery truck had already been to our house dropping pallets of supplies on our door step. We had to make weekly trips to Boston Children's Hospital and our local pediatrician and I did his daily care at home, including Peritoneal Dialysis and shots. Trav LOVED being home, he was always so content. And we loved having our whole family under one roof. Our two year old, Brandt, loved to play the role of big brother, helping mommy with diapers (only poop, no kidneys remember!) stuffing Trav’s pacifier back in his mouth and turning his swing back on. On December 13, 2013 it all came crashing down… On our way to bring Travis to Boston for something we thought was minor, he stopped breathing. We rushed to the nearest hospital while I performed CPR on him, sadly, he didn’t make it. Travis was gone before he ever got into the hospital. We couldn’t understand what happened, yes, he was sick, but not in a critical state. How could it go so wrong so quickly? It was two and a half months later that we can say we know ‘why’. After meeting with two of the most amazing doctors and nurse in the world we got some answers. Travis died due to -necrotizing enterocolitis with prominent typhlitis and sepsis , that is straight from the report. I can’t really tell you what that means other than it is kind of like when people say they “went septic” Frustrating. They don’t know how, or why, just that it was not our fault, it happens within hours, and we couldn’t have changed anything. One important thing that was discovered was, Travis did NOT have Pulmonary Hypoplasia. So, as sad as Trav’s passing was, something so important was learned. We have decided to use our love for Travis to help other families with children suffering from ARPKD. We had such an amazing support group that helped to care for our two year old, raise money and take care of our house while we were spending weeks 2 hours from our home in the hospital with Trav. It’s because of Trav that we learned how lucky we are, and how so many families don’t have the help they need. We are planning our first fundraiser this September in hopes to raise some money to help a family in need. The goal is to provide assistance to a family/families that have to travel and balance caring for their children and being away from home. If you would like to donate money, help in planning, or your knowledge of running a hopefully, soon to be 501 C 3 nonprofit please contact Kelly or Nicholas Mears at TravisMears_fdn@hotmail.com
