Mother learns why sons life is cut short

Autopsy reveals a rare metabolic disorder caused young mans liver failure

After Katherine Melo’s 22-year-old son died unexpectedly, an autopsy revealed his cause of death.

Since childhood, Julian F. Gildersleeve had a mixed diagnosis of autism and developmental disability. But it was metabolic disorder that led to his death in a Salem group home on April 2.

Melo, a special education teacher at Gresham’s Kelley Creek Elementary School, says while Julian’s physical health often came under threat because of his disabilities, his death was a shock.

It wasn’t until Melo requested an autopsy that she learned what ended her son’s life prematurely.

Dr. Steven Fletcher, medical director of Samaritan Albany General Hospital, said Julian died of liver failure as the result of an “undefined inherited metabolic disorder.”

The final diagnosis was a massive hepatomegaly with macrovesicular steatohepatitis; or in layman’s terms, an enlarged and fatty liver.

When he died, Julian’s liver was four to five times the normal size.

How does one get a liver like that?

Fletcher said it can be caused by a number of things including long term alcoholism and diabetes. But, such as in Julian’s case, the disease also can result from a list of inherited metabolic disorders.

“He was unfortunately born with an unrecognized metabolic problem,” Fletcher said.

The number of metabolic disorders is extensive, he said. There are more than 20 known genetic variations.

Because the diseases are rare and hard for doctors to track, Fletcher said there is no diagnostic tool to determine what Julian had at birth. And even if it was recognized, he said, there are no preventable treatments.

Fletcher also said there is no evidence that links Julian’s developmental disability or autism to the disease. However, those with an inherited metabolic disorder commonly have a shortened life expectancy.

Melo wishes she could have learned of Julian’s metabolic disorder earlier. Like most loving mothers, she would have searched for treatments and done anything in her power to prevent her child’s death.

“It raises so many questions,” Melo said. She hopes Julian’s story will prompt advancement in medicine or at least help provide answers to others with Julian’s disorder. “My hope is there will be more and more information available,” she said.

Julian was born at Portland Adventist Medical Center on Feb. 12, 1991, to Melo and Jon Gildersleeve. He was diagnosed with autism and developmental disabilities around the age of 5.

Melo started her son in speech therapy and special education services in Portland. Most recently, Julian attended and aged out of Pathways, a special needs school in Gresham, at 21 years old.

Academically, Julian was able to recite some words, like logos or movie titles. He never learned to read, his mother said, and when he died, his mind was developmentally stuck at 3 years old.

Socially, Julian loved people.

“He had a great sense of humor,” Melo said. He loved dancing and music, like The Beatles, and movies, like “The Phantom of the Opera.”

When his health permitted, Julian enjoyed going for walks, bike riding and hiking.

But the heavy doses of medication Julian routinely took throughout his life often made him drowsy and fatigued, and in the last few months of his life, his activities were limited.

After Julian graduated from Pathways, his family placed him in a young adult group home in Salem.

Melo said there were plans for Julian to move closer to family in Portland, but he died before then.

Melo saw her son for a last time the weekend before. She reflects on Julian’s life, the challenges and the rewards.

“There were so many challenges,” she said. “At times, it was hard to be in public at all.”

Julian went through a phase where he would obsess over strangers’ wearing glasses, she said.

“He would grab them and break them and I would have to replace them.”

Melo said managing Julian’s disability often made her feel isolated.

“It was all very difficult,” she said.

On the flip side, Julian gave his mother a motivation in life.

“He gave me a career,” she said. With firsthand knowledge of disabilities, Melo said it was a natural fit for her to go into special education.

“I’ve had a great gift of understanding and working with families and their children,” she said.

On May, 13, Melo will travel with her son’s ashes to the sacred city of Vrindavan in northern India, where she will spread them in the Yamuna River, the largest tributary of the Ganges.