Tayla Richardson was being treated for a rare metabolic disorder, when it all went horribly wrong.
Dressed up as a princess, happily playing with her brother Jeremy and sister Molly, Tayla Richardson can’t help but make you smile.
With her cheeky grin, her sparkly beloved Princess gown and her long brown hair, you can imagine the laughs and the sibling bickering, the silly songs and the endless games. Tayla Richardson could be any of our daughters.
Except three-year old Tayla is dead. And her parents say the reason is medical negligence, when she was given nearly 10 times the amount of medication required for treatment of a rare metabolic disorder.
It was only 7-months before Tayla’s death that her family discovered she had Urea Cycle Disorder, a disorder which led her to develop bizarre food cravings. Tayla would beg for McDonald’s fries or hash browns. She would eat red capsicum dipped in balsamic dressing, and had no interest in soft drink, instead only desiring water.
Urea Cycle Disorder is a genetic disorder caused by a mutation that results in a deficiency of one of the six enzymes in the urea cycle. These enzymes are responsible for removing ammonia from the blood stream. Excessive ammonia in the blood can reach the brain and can cause irreversible brain damage, coma, and/or death.
In May 2011, Tayla became desperately ill. Three days of continuous vomiting made doctors test her for a range of rare disorders. They came up trumps. Tayla’s Urea Cycle Disorder had been missed in newborn screening.
Her Mum, Cath Richardson told News Limited that she was beginning to doubt her skills as a mother.
“I was thinking I was a terrible mum, feeding her junk,” Cath says. “Actually, it was good for her.” Urea Cycle Disorder is a condition that made Tayla’s body require many more calories than an average three-year old, but she struggled to digest protein.
The family became experts at seeking out where the best chips were in town. For this Victorian country family dealing with Tayla’s rare disorder was tough. Everything Tayla ate was carefully weighed and catalogued. She had a gastric-nasal tube inserted to deliver a special low-protein, high-kilojoule formula.
While treating the condition was difficult and required many hospital visits it was expected that she would have a life expectancy well beyond her teens.