GUILDERLAND: Illness inspires family to help others

Shortly after birth, Thomas had liver failure, so doctors began testing him for Tyrosinemia, a rare genetic disorder characterized by elevated blood levels of the amino acid tyrosine, a building block of most proteins. Symptoms of Tyrosinemia generally appear within the first few months after a child is born and include failure to gain weight, diarrhea, jaundice and an increased tendency to bleed.

Though Thomas displayed many of these symptoms, after several tests, doctors concluded that he did not have Tyrosinemia and sent him home.

Morrison said that for the most part, her son showed few signs of a serious illness in the weeks that he was home.

"We had a very happy baby. He smiled; he was responsive to us," she said.

However, the Morrisons continued to make several trips to the doctor because Thomas failed to gain weight.

"We were constantly at the doctor's office; constantly trying to figure out what it is," she said.

A search for a diagnosis

After a trip to Boston Children's Hospital, where doctors were unsuccessful in diagnosing the disease, the Morrisons were transferred to Rainbow Babies and Children's Hospital in Cleveland, Ohio, to be treated by a doctor who specializes in mitochondrial disorders, Dr. Douglas Kerr.

Kerr said that, at the time Thomas came in for treatment, "his disorder was not known. He had severe liver failure, and it wasn't clear that it was caused by a metabolic disease, and it didn't seem to fit with anything we were considering."

Meanwhile, the Morrisons were becoming frustrated, with few answers as to why their son was sick.

"There are so many different types of mitochondrial disorders, so if you can't diagnose it, you can't treat it," Morrison said.

Despite doctors' continuous efforts to come up with a diagnosis at Rainbow Children's and Babies, Thomas died after undergoing surgery for a liver and a muscle biopsy.

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