Melissa Hall went through her struggle with the rare disease chiari malformation alone.

Her eight year old son Kyle won't have to.

Hall, 26, was diagnosed with the congenital disease in September of 2008 after suffering from severe headaches and other health problems since her childhood. As a result of her struggle, Hall created the Forget Me Not Nebraska Web site, forgetmenotnebraska.org, as a support group for other Nebraskans with rare diseases.

This past week, Hall was invited to speak with Nebraska's senators and representatives in Washington, D.C. through the Patient Advocate Foundation. Hall represented Nebraska alongside 46 other advocates at the 10th Annual Patient Congress, a convention that Hall's mother-in-law Sherry described as a once-in-a-lifetime opportunity.

"I told her 'you have to go,'" Sherry Hall, 52, said. "I was excited, I think it's a good opportunity for her to get her voice heard. She's just trying to help in whatever way she can."

As a part of the program, Melissa Hall got to hear wife of U.S. Senator John Edwards, Elizabeth Edwards -- who is battling breast cancer -- speak about the need for health care reform. Hall was also able to talk with Senator Mike Johanns and Congressman Adrian Smith about her disease and her opinions on health care reform.

"They were all very receptive," Hall said. "They listened to my story. They sat down with me and talked with me for a good half an hour about what I think needs to happen and what other patients like me in Nebraska are going through. I felt like I was talking to a good friend."

Chiari malformation is a structural defect in the cerebellum, which is pushed downward by a lack of space at the lower portion of the skull. The pressure caused by the cerebellum can block the flow of cerebrospinal fluid, which surrounds and cushions the brain.

Hall said the symptoms can include headaches, seizures, nausea and ringing in the ears and are very similar to the disease multiple schlerosis. The disease prevented her from simple tasks such as driving and taking care of her kids and often she had to use a wheelchair or a cane.

In February, Hall underwent posterior fossa decompression, a surgery that essentially made more room for her cerebellum. Four months later, Hall said she is a different person.

"It's amazing," she said. "It has been such a drastic change."

With her newfound energy, Hall said she decided to reach out to other Nebraskans who may not be so lucky.

"I hear all these stories about people who can't get answers," Hall said. "It breaks my heart that people go years and years without getting answers and without getting treatment."

The Web site is a way for Nebraskans with rare diseases to connect. Hall said she is planning group meetings this summer and a walk to raise awareness about her disease.

"It's such a lonely thing and I want to be able to help other people," Hall said. "I want to be able to get together and talk about our struggles and things that help us feel better."

Hall plans to attend the University of Nebraska at Omaha this fall to earn a degree in pre-med and biotechnology with hopes of someday becoming a doctor. Until then, the Web site is her way of helping others.

"The Web site is what I can do right now," Hall said. "Physically, I'm still recovering. Right now I can reach out to other people and tell them what doctor's I saw that were empathetic or just listen to them."

Hall said her trip to Washington, D.C. made her hopeful for change in the future. She plans to return to Patient Congress next summer.

"This program is going to help me learn how to get my voice heard," Hall said. "I can tell people that we really do need to write our congressmen and they really do listen to us. It was very uplifting and I'm glad that I can finally make some sort of difference."

Just before leaving for the convention, Hall's son experienced hearing loss and ringing in his ears. His diagnosis? Chiari malformation -- the same disease that disabled his mother for the majority of her life.

This time around, Kyle already has a support group.

"It's not just me anymore," she said. "It's my son that's going to have to deal with this, too. There are so many people across the state that have to deal with it. Somebody needs to speak up for us."

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