By Lauren Wanko
This was the moment Philadelphia Eagles fan Ron West had waited weeks for — meeting NFL Eagles player Jon Dorenbos.
Even though he can’t express his joy at this moment, the staff at Leisure Chateau Care and Rehabilitation Center say he’s beaming. The 45-year-old is battling Huntington’s disease — an inherited neurological disorder. The gene is passed from parent to child and every child of an affected parent has a 50 percent chance of getting the debilitating disease.
“This disease causes degeneration of certain regions of the brain. It does so because the gene’s responsible for making a protein called Huntington and this protein in patients who have Huntington’s disease is abnormal and causes brain cells to die prematurely,” said Dr. Michael McCormack, director of the Samuel L. Baily Huntington’s Disease Center.
Symptoms typically include uncontrollable dance-like movements, memory loss and personality and behavior changes. Dr. McCormack says the primary issue is making the correct diagnosis.
“Prior to the early 1990s, we really didn’t have a genetic test that we could do. Now we actually have DNA-based tests, which we can look for the mutation that occurs in Huntington’s disease,” he said.
Statewide there are 871 people with Huntington’s disease. There is no cure.
“The disease is considered to be a progressive disease in which the symptoms occur during the mid-stage of life and do progress over a period of 20-plus years,” McCormack said.
Ron was diagnosed in 2003. He was always an Eagles fan and had season tickets. He still watches the game every week with his nursing aid.
When asked what it means to him to know that it’s Ron’s dream come true to meet him, Jon Dorenbos said, “I was blown away. What an honor. I’m flattered. The greatest compliment in life is that somebody just wants to spend time with you.”
And today that’s exactly what these two sports enthusiasts did. Jon shared his love of magic.
“It’s given me a tool to create a relationship with people,” he said.
Staffers here say this meeting is especially meaningful to Ron because he’s already lost so much to the disease, including members of his family. His daughter passed away when she was just 12 years old.
“And while we rarely see Huntington’s disease in children, when we do see it it occurs at a very young age and it’s a very rapidly progressive condition where these children typically only live a few years,” McCormack said.
Pictures of Ron’s daughter and Eagles posters fill the walls of his room.
“This is such a great thing, a great big excitement in his life that otherwise he would not have,” said Judy Cerciello, director of social services at Leisure Chateau Care and Rehabilitation Center.
Ron’s social workers say in a way this meeting, this dream come true, is also a way for Ron to raise awareness about Huntington’s disease.
“I think on some level he would want to know that his having this disease brings meaning. He’s not suffering for nothing,” said Christine Hogan, a social worker at the Samuel L. Baily Huntington’s Disease Center.