A second chance at life

Kaitlin Burns is able to be an active participant in her class. - Courtesy Photo
Kaitlin Burns is able to be an active participant in her class.
— image credit: Courtesy Photo

Today, life is pretty normal for 14-year-old Kaitlin Burns. She likes playing tennis. She's learning to ride a bike. She bickers with her little sister, Maddie. But just over a year ago, that wasn't the case.

When Kaitlin was just two weeks old, she was diagnosed with propionic acidemia – a rare, inherited disorder that prevents her body from processing certain parts of proteins. The condition - which affects only 1 in 100,000 people – kept Kaitlin sick.

"The problem with most kids that have this condition is that, at nine months, they have no desire to eat," said Kaitlin's mother, Michelle.

As such, Kaitlin received sustenance through a feeding tube for most of her life. By the time she reached age 13, Kaitlin had the cognitive abilities of an infant, could barely speak and was bound to a wheelchair.

"Because of the toxin levels in Kaitlin's body, she was always in a haze," Michelle said. "Like she was drunk."

That all changed in January 2012, when Kaitlin underwent liver transplant surgery.

The biggest problem about Kaitlin's condition is that there is no cure. And while many in the medical community believe the disease can be treated through diet and medication, for Kaitlin, that wasn’t enough.

When Michelle heard about another child with propionic acidemia who had received a liver transplant with great results, she sought the help of Dr. Simon P. Horslen, Medical Director of the Liver and Intestinal Transplantation division at Seattle Children's Hospital. After several discussions about the severity of Kaitlin's condition – and five months on the transplant list – she underwent the procedure.

"The following day, she seemed like a different girl," Michelle said.

From the minute Kaitlin awoke she was feeling better – talking to her parents about things that had happened years previously, things they didn't think she'd be able to remember. A little over a year later, Kaitlin doesn’t experience any of her propionic acidemia symptoms and has a liver capable of metabolizing the amino acids her body was unable to process previously.

Dr. Horslen said the only risk Kaitlin faces in the years to come is that her body could reject the organ. However, he said the chance of that happening is very slim, especially as long as Kaitlin keeps to her prescribed medication and visits the hospital every few months.

Though Michelle said Kaitlin will likely never be at the same level as her peers because of the effect the toxins had on her brain, she said her daughter is doing better than they ever expected.

"The quality of life for our whole family has changed for the better," Michelle said.

Kaitlin is currently enrolled in the Special Education program at Highland Middle School in Bellevue, where, for the first time, she's able to be an active participant in her class; she's even reading and doing math.

But more that that, Kaitlin is finally getting to experience life in a way she never has before. This summer she'll make her second trip to Camp Korey, an overnight camp for children with life altering medical conditions – on her own two feet.


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