Michael was born with Bilateral Kidney Disease and Chronic Kidney Disease. This is a disease where the kidneys do not fully develop in the womb and his father (Mike) and I never knew that he had this. At the age of 5 (2012), Michael had been diagnosed with Strep Throat and still had a fever that after 2 rounds of antibiotics landed him in the hospital. We took him to Cook Children’s Urgent Care and he was transported to Cook Children’s Hospital in Fort Worth. While he was there, they did a lot of bloodwork and noticed that his kidney function was not normal. After an ultrasound and more blood work was when we received the diagnosis. We were all shocked and scared, but blessed to have been at this hospital. The doctors and staff at Cooks were amazing! After he was released we started seeing the Nephrology team at Cooks. After monitoring him for about a year or so his nephrology doctor ordered another ultrasound and found that his spleen was enlarged and he also had fibrosis of the liver. They had initially seen cysts on his kidneys, but those had actually gone away. Michael was referred to a Gastroenterologist (GI) to check his liver function and after bloodwork it showed that his liver function was normal. In 2019, Michael’s blood sugars started showing that they were elevated on his kidney function panel and he was then referred to an Endocrinologist. They tested him for Type 1 diabetes and his antibodies came back negative as a type 1, but his Endo doctor also felt he wasn’t a Type 2. It was then that his doctor mentioned MODY (Mature Onset Diabetes of the Young) which is a rare form of diabetes and is caused by a mutation in a single gene. Insurance do not like paying for this genetic testing so there was a lot of going back and forth. We monitored his blood sugars for a while by checking his A1C and finger pricks. Everything seemed to be going ok until August 2020, I received his kidney functional panel and glucose was close to 900!! I rushed him to Cooks ER and they kept him for a couple of days and luckily he didn’t end up in the ICU. It was then that they started him on insulin injections and a few months later we received his genetic testing back and he did have MODY 5. MODY 5 involves the pancreas, liver and kidneys. Things started to make a little bit more sense to us. Most diabetics are diagnosed later in life with kidney disease and in Michael’s case it was the opposite. He continues to take insulin injections and also uses a CGM (continuous glucose monitor). His pancreas also doesn’t produce digestive enzymes, so he has started taking a medication for that as well. 

His nephrologist has always hoped that he could skip dialysis and go straight to transplant. In July 2021 his kidney function dropped below 20% and his doctor wanted to start the transplant testing. It took about 6 months for all of his tests and in January 2022 we met with the Transplant team. At the end of January, Michael was placed on the Cook Children’s waiting list with UNOS (United Network for Organ Sharing) to receive a lifesaving kidney transplant. If you are interested about donating a kidney to Michael you can learn more by downloading this Living Donor Packet and/or contact Michael’s Renal Transplant Coordinator Julie Barrow.

Julie Barrow, RN, CPN, CNN
Renal Transplant Coordinator 
Renal Transplant
1500 Cooper Street, First Floor
Fort Worth, TX 76104
p 682-885-2871
f 682-885-3247

Michael has been an active teenage boy who loves basketball, fishing and is involved with the Agriculture Program at his High School. He has a love for animals and has been accepted in the Canine Companion for Independence to help train service dogs. His dream would be to become a Vet one day. 

Transplant can be very expensive with pre and post doctor visits, a lifetime of prescription medicines and not to mention any other misc expenses can be very stressful and overwhelming. Thanks to COTA we have a way for family, friends, and others for help us along this journey. COTA will assist our family with transplant-related expenses. Please consider donating to COTA in honor of Michael. 

Thank you for taking the time to read about Michael and thank you for the continued support from all of our family and friends!! We love you all, Mike, Kayla, Michael and Cameron.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.