HELP ALLISYN LOADER!

Allisyn’s medical condition started while still in utero.  At her 19 week ultrasound appointment, the technician detected a duplication of her left kidney (extra ureter) and a small defect in her bladder called a “ureterocele”.  This condition is quite common, repairable, and does not normally cause much complication.  However, in Allisyn’s case this small anomaly is the beginning of a long and very complicated road.  

 In her first 9 years of life, Allisyn has undergone 20 surgical procedures under anesthesia. Her ureters have been reimplanted to her bladder multiple times, ports were created for voiding, stints were installed for continuous drainage of her kidneys, and her bladder has been entirely rebuilt and augmented, using some of her lower intestine for added volume.  

Allisyn continues to have a neurogenic bladder that fails to communicate properly with her brain.  It cannot sense its capacity limitations and causes severe and continuous pain.  For the past 2 months, pain from her bladder and kidneys has limited her ability to walk and move properly.

For multiple reasons her doctors believe they have done everything they can with this problematic bladder, but the time has now come where it would be of greater benefit to remove this organ all together.  Next month, Allisyn will undergo a very complicated procedure (#21) to remove her bladder and rebuild a substitute reservoir from her colon and bowel material.  Although this procedure is more common in older adults with bladder cancer, it will be only the 3rd time performed on a child in the state of Utah.  It is estimated she will be in the operating room for 12 hours, followed by a 2 week hospital stay and the better part of a year to recover.  For the remainder of her life, she must void her bladder with a catheter via an abdominal port many times a day along with other maintenance actions. 

In addition to the bladder surgical trauma, Allisyn also has one healthy right kidney and only a partial left kidney remaining.  She suffers from frequent urinary tract infections, some of which are very aggressive causing the need for extended stays at Primary Children’s while IV antibiotics are administered.  In her young life, we have counted roughly 36 extended stays in the hospital, along with countless testing appointments in Radiology and other appointments with Urology, Nephrology, Infectious Disease, and her Pediatrician.

Our current goal and focus with Allisyn’s treatment is to protect her remaining kidney function by maintaining lower pressures in her substitute bladder and preventing infection as much as possible.  

Andy and Jamie are amazing parents! We know we cannot take away their stress and worry about the surgery, but we would like to try and help them financially with all of the medical bills.