Rare Disease Mimics Child Abuse, Tears Family Apart - East Idaho News

Rare Disease Mimics Child Abuse, Tears Family Apart

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dave TIffany oshell baby thg 120404 wg?  SQUARESPACE CACHEVERSION=1333622402612Courtesy of Paul Cuin(HENDERSON, Colo) — William “Dave” O’Shell, distraught over charges of child abuse that were being leveled against him, snapped on June 30, 2008, killing his wife, Tiffany O’Shell, in their Henderson, Colo., home before taking his own life.

Just a few weeks earlier, their 3-month-old daughter, Alyssa, had been placed in a foster home because x-rays revealed 11 broken bones and doctors assumed that she had been beaten.  But they were wrong.

On the same day as the murder-suicide, a doctor at Colorado Children’s Hospital suspected something else and was later proved right: Alyssa had a rare genetic disorder that caused her bones to fracture — one that authorities had confused for abuse.

Alyssa died of spinal muscular atrophy (SMA) on Oct. 28, 2008, but the tragedy has rippled through a family and an aggressive social services system that is meant to protect children.

Now, four years later after all lawsuits have been unsuccessful, Alyssa’s maternal grandparents are saying the tragedy could have been averted.

“We were looking for action.  We could care less about the money,” said Paul Cuin, Tiffany O’Shell’s adoptive father.  “We wanted someone to sit up and say, ‘This is wrong and we need to change things.'”

Cuin said there were no avenues for the O’Shells, both respected police officers, to plead their innocence.

“If our kids had some sort of outlet or grievance process or gone to someone, we would have a whole different story today,” he said.  “The system has to change.”

A judge gave Cuin, 59, and his wife, Jackie Cuin, 50, custody of Alyssa after the death of their daughter and son-in-law, despite the objections of social services, according to a story first published in the Denver Post.

“They were wonderful parents,” said Paul Cuin, who is a supermarket manager.  “We never had a single doubt in our minds [over whether] abuse was involved.  We knew from the beginning, they loved that baby.”

They nursed Alyssa until her death and are convinced that if doctors knew more about SMA, the disease might never again be confused with child abuse.

Spinal muscular atrophy is a genetic neuromuscular disease characterized by muscle atrophy and weakness.  It is caused by a mutation in the gene on the long arm of chromosome 5, which makes a protein that is important in the cells of the spinal cord and lower brain stem.

It is not always a death sentence, but those with the most serious form, like Alyssa, can suffer respiratory failure.

The disease is the leading genetic cause of death in infants and toddlers, affecting as many as 10,000 to 25,000 children and adults in the United States, according to the SMA Foundation.

Copyright 2012 ABC News Radio

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