Russell Clanagan lost his daughter Sydney almost five years ago to a rare metabolic genetic brain disease called Leukodystrophy.

lindsay a. miller / arizona daily star

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This should have been Sydney Clanagan's Sweet 16 year.

She should have been knee-deep in activities at Marana High School — making her mark academically, playing soccer, maybe even being a cheerleader.

But Sydney died almost five years ago, ending a 28-month struggle for life. For her parents, Russell Clanagan and his former wife Margaret (Peggy), it was the continuation of a life-altering pain that struck with unexpected ferocity.

Sydney was 8 and in the fourth grade at Coyote Trail Elementary School when her behavior began to change — so much so that in the spring of 2000 the school advised her parents that Sydney likely had developed attention deficit hyperactivity disorder (ADHD).

Her parents, too, knew something was wrong. Their fear, however, was that their divorce, though amicable, was affecting their daughter. Still, on the advice of experts, Sydney was put on Ritalin.

But Sydney developed more tics and twitches and suddenly became clumsy.

Now Sydney was walking on her tippy toes, her hands turned in awkwardly, and, her teachers said, she was easily distracted in class and hard to bring back into focus.

The doctors could find nothing.

Finally, in December 2000, a pediatric neurologist found something, and after further tests and exams, the Clanagans were given the news:

"Your daughter is going to die within two years." No ifs or maybes — "your daughter is going to die."

Sydney was diagnosed with a rare — one in 50,000 people gets it — metabolic genetic brain disease called Leukodystrophy. It disrupts the growth or maintenance of the myelin sheath that insulates nerve cells.

There is no treatment, no cure. Sydney would lose all motor skills. Her arms and legs would become deformed; she would be unable to walk, become incontinent and be unable to speak, eat or swallow. She would go blind and be unable to hear.

In short, there was no hope.

Testing showed that both Clanagans — Russell and Peggy — were carriers of the genetic defect.

Peggy almost fainted; Russell only just kept himself from screaming.

But they weren't alone as they faced the coming ordeal. Before they left the hospital the next day, they were introduced to a woman from Tu Nidito, a nonprofit organization in Tucson with a single purpose: to provide whatever support is needed to children and families dealing with serious illness or death.

"I'll be honest," Russell said. "I had a lot of anger; I didn't want to be bothered" by these people.

But that didn't phase Tu Nidito's staff — people like Martha Bacon, Julie Gell and Patti Gingrich.

Russell likens them to angels who were constant in their commitment to Sydney and her whole Clanagan family.

"At times they were like a parent; other times like a brother or sister," he said. "They were always there — bringing meals to one family but to two homes (his and Peggy's)."

Toward the end, Russell moved into Peggy's house not only to care for Sydney, but also to begin planning her funeral.

And through it all, he said, Tu Nidito's volunteers were there, actually increasing their efforts to help the family.

He is so grateful that he has stayed in contact with the staff and does what he can to assist. "It's a way to keep Sydney's legacy alive," he says.

Russell has even ridden in El Tour de Tucson for the past five years to raise money for Tu Nidito. In fact, he has raised almost $30,000 for "an organization I had never heard of but whose service is not duplicated by anyone."

The only thing Russell has declined to do is serve on the board of directors.

"I had too much grief," he said. "I just can't."