Monday, June 24, 2013

Functional MRI at University of Utah gives researchers great insight into how brains with Down syndrome function

Before we can repair the neuronal connections in the brain which are not functioning, we have to see where they are. This new use of Functional MRI has the potential to pinpoint the over-connectedness or lack of connections between different parts of the brain of a person with trisomy 21.
Watch the news video here.

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Saturday, June 22, 2013

The Tragic Death of Robert Gensiak, 32, with Down syndrome

I started this blog to share the joy of raising a child with Down syndrome, but sometimes my heart isn't joyful.  The tragic realities of those who cannot love people with Down syndrome often haunt me, I can't sleep tonight because I read this news story of a man with Down syndrome named Robert Gensiak, age 32 who died of neglect, while living with his mother and two sisters.  My heart is broken.

For two years, Robert Gensiak's world was his bedroom.
It was there, his family kept him from doctors, even when his skin cracked and bled and open sores formed from being forced to stay in his child-sized bed covered in feces.
And it was there, the 32-year-old Taylor man with Down syndrome wasted away to 69 pounds because his mother and sisters were starving him to death.
On Wednesday, about three months after Mr. Gensiak died, police charged his mother, Susan Gensiak, 59, of 12 Williams St., and two sisters, Joan, 35, and Rebekah, 24, with murder.
Read the complaint HERE"This is the worst case of neglect I've seen the last 26 years," said Lackawanna County District Attorney Andy Jarbola at a press conference Wednesday. "This family, the mother and two sisters, basically let this young man rot to death."
Mr. Gensiak had been weakening and could not walk without assistance by the time the family called an ambulance on March 19 at the urging of his doctor, Paul Remick, D.O., whom they had not taken Mr. Gensiak to visit for two years. Mr. Gensiak was taken to Regional Hospital where doctors said he had severe psoriasis associated with hypothermia. His body temperature was only 92 degrees.
He died March 20, and weighed just 69 pounds, police said.
An autopsy conducted by forensic pathologist Gary W. Ross, M.D., revealed an extreme case of neglect. Autopsy photos show his skin was a sickly yellow with cracked areas that had oozed with blood and fluid. Open sores pockmarked his body, so extreme in spots that his bone was visible. As a matter of taste, The Times-Tribune is not publishing the photos.
The remaining teeth he had were loose and ready to fall out. Lice covered his head. Dr. Ross found no food or significant fluid in his stomach.
"It's amazing to me that anyone could allow someone to go through this type of pain and torture," Mr. Jarbola said.
His official cause of death was sepsis, due to the breakdown of his skin, plagued by a widespread infestation of Norwegian scabies. His open sores and malnutrition also contributed to his death, Dr. Ross said.
Lackawanna County Coroner Tim Rowland ruled the manner of death as homicide due to neglect.
The house itself did not appear overtly dirty, but it was cluttered, investigators said. At a glance, there would be no indication that there was anything seriously wrong.
But when investigators opened the back bedroom where Mr. Gensiak was kept in seclusion, an overwhelming wave of human waste washed over their sense of smell, Lackawanna County
Detective Castellani described Mr. Gensiak's room as a scene of utter filth. The child-sized bed he had to sleep on was covered in fecal stains, as was a chair he would sit on.

Robert's mother hadn't taken him to the doctor in two years, saying she had no transportation, and her only concern was to ask if his SSI checks would be discontinued after his death. There is no excuse for these three women to treat their sibling with such unimaginable cruelty. They are all in prison tonight, three months after Robert's terrible death. Robert is resting in the arms of the Lord tonight, and I think he is asking God for mercy on his family. That's what people with Down syndrome do. They give love unconditionally. They are prodigious givers, they do not take what is not theirs, they show love openly and do not treat others cruelly. The family of Robert Gensiak are the handicapped ones. They are without functioning hearts. 
Tonight as my daughter Christina slept, I prayed the Rosary for this situation and all those people with Down syndrome who are suffering in silence as Robert did. As I prayed the Rosary,  I took the psoriasis medication we bought for Christina, and, as she slept, and I anointed her scabs (many times she won't allow us to do this while she's awake). I was giving her the tender care poor Robert needed so desperately and never received. I felt as though I were touching the wounds of Jesus, and indeed I was, as He said, "whatever you do for the least of these, you do to Me."
Jesus, teach us to love those whom You have entrusted to our care. Teach us to serve them in love and tenderness, and with sacrifice not self interest. Please have mercy on the vulnerable people with Down syndrome like Robert Gensiak and Ethan Saylor and teach us to love them as they love us. 

If you see abuse like that suffered by Robert Gensiak, do the right thing, call 911. 

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