Shiloh man battles rare disease
To 31-year-old Robert Deberry, of Shiloh, life is a daily battle, but one which he will not give up on. “I am never going to give up. I am going to get through this. I live for my wife and daughter,” he said.
Robert inherited a very rare disease, Fabry disease, from his mother’s side of his family. The disease causes all kinds of problems, including headaches, neuropathy, and nausea and attacks all of one’s major organs.
Robert first started seeing signs of the illness with terrible, burning pain in his feet and legs at age 13, and was formally diagnosed at the young age of 18.
In 1998, Robert began going to the National Institute of Health in Bethesda, MD for treatment with an artificial enzyme, replacing the lacking element in his body due to Fabry.
Robert has numerous health problems, has had two major ear surgeries, multiple mini-strokes, countless seizures and began experiencing kidney failure in late 2009.
After being put on the kidney transplant list at Vanderbilt University in 2009, Robert was forced to begin home dialysis in February 2010, having to be hooked to his home machine nine hours a night while he tries to sleep.
When dialysis began, the drug company that was providing Robert’s experimental enzyme treatment temporarily stopped the treatment.
One of Robert’s 13 Vanderbilt doctors was able to get that decision overturned and get the treatment started again. Robert is one of only a handful of patients currently on the drug in the United States.
Robert travels to Vanderbilt every other Monday for his enzyme treatment and various other appointments with his many doctors. Karen is always with her husband, saying, “There have been several times I was afraid to leave his side, afraid that when I came back he might be gone.
“I have learned a lot in this past year—to not take things for granted. I worry about taking care of Annah. Robert is the love of my life; I cannot imagine my life without him,” said Karen.
Robert pushes himself and refuses to give in to his problems, saying, “It is hard because I can’t really take care of myself, so I can’t take care of my family.”
Robert has worked very little in the past two years while on medical leave from his job as a salesman with A T & T in Jackson. He automatically qualifies for disability with his illness but has not filed due to insurance reasons. He still believes he will be able to return to work.
The hope is that with a new kidney and continued enzyme treatments, his overall health could greatly improve.
The family invites those interested in more information on transplants and possibly donating a kidney in Robert’s name, which would allow him to move to the front of the list, to go to www.vanderbilthealth.com/transplant.
Family, friends and fellow church members of West Shiloh Baptist Church are organizing a benefit for the family to help with their tremendous medical expenses.
The benefit will be held Saturday, July 9, at the Stantonville Civic Center, beginning at 10 a.m.
The Smokehouse Rednecks will be cooking barbequed pork, chicken and bologna.
There will be cake walks, silent auction items, live musical entertainment under the pavilion, and they hope to have several items to raffle off.
The group continues to accept financial donations to offset the costs of staging the benefit and any donations for the silent auction, etc. would be greatly appreciated.
Dana Johnson, who is heading up the event, says they need all the volunteers they can get to help. For more information, or to help, call Dana at (731) 645-1156.