Rare Disease Mimics Child Abuse and Tears Family Apart

PHOTO: David and Tiffany OShell of Henderson, Colo., with their daughter, Alyssa.
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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 green-eyed, 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 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.

The newspaper obtained medical, social services and police records in their investigation, as well as court documents on the Cuins' lawsuits.

"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, or SMA, 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.

"It took seven months to diagnose my 12-year-old daughter, and my husband comes from a family of scientists and we live in New York City," said Loren Eng, president of the SMA Foundation. "So few doctors are aware of the disease and it causes a wide variety of symptoms. It's really an awareness problem."

Dr. Darryl De Vivo, a professor of neurology and pediatrics at Columbia University, said SMA can "masquerade to some degree" as child abuse, "at least to the uneducated eye."

"The nature of this disease is such that it allows the bone to be unduly susceptible to fractures in the normal handling of the infant," he said.

De Vivo added that with heightened awareness to child abuse, "people jump in and say guilty before being proven innocent."

The Colorado case began in on June 16, 2008, when Tiffany O'Shell noticed that Alyssa cried when she lifted her right leg. The baby was referred to Children's Hospital of Colorado, where x-rays revealed fractures, but no bruises or abrasions.

"We pleaded with the doctor at Children's Hospital and social service to look for something else other than child abuse," said Paul Cuin. "They should have waited and not jumped to conclusions."

Elizabeth Whitehead of Children's Hospital Colorado said the hospital would not comment "on alleged child abuse cases, past or present."

Child protective services took Alyssa immediately and placed her in a foster home. Her grandparents were ruled out as guardians because Jackie Cuin had spent time babysitting the child and was considered a suspect.

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