AUBURN - A community was united in their support on Sunday of a local woman and her family as she seeks treatment for a rare neurological disorder.
With medical and travel expenses piling up, Lisa Lewis, of Weedsport, said the proceeds of the event, which was held at Dilaj's, are going to be used for her continuing treatment for Chiari Malformation, a condition where the brain descends out of the base of the skull and crowds around the spinal cord.
To receive the best treatment available, Lisa said she has been traveling to the Chiari Institute in Long Island, where she has already undergone one surgery out of two possible procedures.
“It's been hard, especially because I feel so alone down there because there are no familiar faces,” Lisa said. “And going into the first surgery was hard because I was afraid I might not come out of it.”
While Chiari Malformation can be hereditary, Lisa said her doctors believed it was the result of severe head trauma that she suffered in one of two major car accidents several years ago.
With symptoms consisting of ear aches, dizziness, difficulty swallowing and walking, Lisa said it took nearly six years to be properly diagnosed because several of her prior doctors believed she was suffering from the side effects of her previous injuries.
But Lisa was not the only one suffering, the situation had even affected Lisa and her husband Gary's daughters, Mariah, 11, and Madison, 6.
“Madison has separation anxiety, she can't even go to the movies without me,” Lisa said. “One of my symptoms is that I can't stand or sit for a long time, so I really don't like the seats at the theater. I can't even do activities with her like going for walks.”
With family issues added to the stress of medical appointments, finances and traveling for treatment, Gary said it was nice to have the community showing support for his wife.
“I honestly didn't think we had this many friends,” Gary said with a chuckle as visitors lined up to greet his wife. “It's nice to know we have their support and help, but it's still hard for us to accept everything, especially because she's such a giver.”
Letha Whitford, a family friend, said she believed it was important for the community to show their support during times of need. To help with the benefit, Whitford donated a free hot air balloon ride for one of the door prizes.
“I think it's just wonderful what people are doing for others,” Whitford said. “She is a very deserving person and they are a very nice family. They are very deserving of this event.”
Lisa's mother, Chicki O'Connor, said that even though the situation had been hard for her and Lisa, she wanted to put on the event to ensure her daughter got all the help and support she needed.
“I'm an emotional wreck, I cry a lot,” O'Connor said. “When it's your own daughter it's different. I've done other benefits, but it's so much harder when it's your own child. Everyone has been so gracious to her today.”
Staff writer Nate Robson can be reached at 253-5311 ext. 248 or nathan.robson@lee.net
To receive the best treatment available, Lisa said she has been traveling to the Chiari Institute in Long Island, where she has already undergone one surgery out of two possible procedures.
“It's been hard, especially because I feel so alone down there because there are no familiar faces,” Lisa said. “And going into the first surgery was hard because I was afraid I might not come out of it.”
While Chiari Malformation can be hereditary, Lisa said her doctors believed it was the result of severe head trauma that she suffered in one of two major car accidents several years ago.
With symptoms consisting of ear aches, dizziness, difficulty swallowing and walking, Lisa said it took nearly six years to be properly diagnosed because several of her prior doctors believed she was suffering from the side effects of her previous injuries.
But Lisa was not the only one suffering, the situation had even affected Lisa and her husband Gary's daughters, Mariah, 11, and Madison, 6.
“Madison has separation anxiety, she can't even go to the movies without me,” Lisa said. “One of my symptoms is that I can't stand or sit for a long time, so I really don't like the seats at the theater. I can't even do activities with her like going for walks.”
With family issues added to the stress of medical appointments, finances and traveling for treatment, Gary said it was nice to have the community showing support for his wife.
“I honestly didn't think we had this many friends,” Gary said with a chuckle as visitors lined up to greet his wife. “It's nice to know we have their support and help, but it's still hard for us to accept everything, especially because she's such a giver.”
Letha Whitford, a family friend, said she believed it was important for the community to show their support during times of need. To help with the benefit, Whitford donated a free hot air balloon ride for one of the door prizes.
“I think it's just wonderful what people are doing for others,” Whitford said. “She is a very deserving person and they are a very nice family. They are very deserving of this event.”
Lisa's mother, Chicki O'Connor, said that even though the situation had been hard for her and Lisa, she wanted to put on the event to ensure her daughter got all the help and support she needed.
“I'm an emotional wreck, I cry a lot,” O'Connor said. “When it's your own daughter it's different. I've done other benefits, but it's so much harder when it's your own child. Everyone has been so gracious to her today.”
Staff writer Nate Robson can be reached at 253-5311 ext. 248 or nathan.robson@lee.net
