My name is Meagan and I’m here to tell you about my incredible 5 year old nephew, Jameson, and his rare medical journey.
Jameson was born with a rare birth defect called bladder extrophy, which caused his bladder to form on the outside of his body. It has required 4 major surgeries and countless minor ones in an attempt to keep him healthy. Unfortunately, he still suffers from constant recurring infections and his kidneys are now suffering.
Over the course of the last 5 years, he has had more kidney infections than his team of doctors can keep track of. This 5 year old has spent as much time being in a hospital as he has being out of the hospital, but he remains the happiest and most optimistic kid. Since November of 2020, he has been in the OR 9 times where the surgeon has scraped infected tissue from his bladder in an attempt to treat and prevent the recurring infections. In July a kidney test was done which showed one kidney is growing abnormally, and the other has lost a significant amount of function. The kidneys are unable to repair themselves and will not regain function once it is lost. This finding has fast tracked Jameson to a very intense, and life altering FIFTH major surgery in his 5 short years on this earth.
It is a 12-16 hour surgery that will give Jameson the ability to be continent and also, fingers crossed, reduce the amount of kidney infections he gets. They will be removing his bladder and making him a new bladder out of his bowels. Then they will use his appendix to create a channel from his bladder to his new man made belly button that he will use to empty his bladder with a catheter. Because his bladder has been operated on so many times, it is basically all scar tissue. As it fills with urine the urine backs up into his kidneys and causes the constant kidney infections and the resulting kidney damage. With the bowels being the new bladder they will slowly stretch to hold a normal amount of urine and not backup into the kidneys.
This is a grueling physical, mental, and emotional surgery for Jameson and his parents. They live in Washington but will travel cross country to his team of specialists in Baltimore. Jameson, his parents and his 1 year old sister will live at the Ronald McDonald house for 2-3 months for the surgery and recovery.
Jameson’s parents are both registered nurses. His dad is just shy of qualifying for paid FMLA time to be there to support his family, but he has been approved to take the time off unpaid. His mom has been unable to accept a nursing position as she has devoted the last 4 years to his medical care and time in the hospital with him.
I’d love to be able to raise enough funds to cover their mortgage, utilities, car, insurance, and groceries for the time they will be going unpaid. We pray this is the last major surgery for our “Baby Jameson” and hope he can return home healthy and ready to enjoy his first year of school with his new friends! This boy is ready for a “bonfire to burn all of my pull-ups!” as he recently told his dad. Let’s send them off with a huge burden lifted ❤️
