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A white, lacy wedding gown hangs on the wall at the foot of Heidi Wright's bed. She looks at it every day, and thinks about passing it down to one of her young daughters.

Wright, a single mother, knows that she probably won't be alive when her girls, now 8 and 11, get married. In April, she was diagnosed with Huntington's chorea, an inherited degenerative disease that affects a person's mental and physical abilities. Compounding her medical situation is a lesion on her spinal cord that causes severe pain every day.

The effects of Huntington's disease are rippling through the family of John Patrick Martin, who had the disease and took his own life in 1999. Shown here, from left, are brother Narayana Martin, daughter Julie Martin, 17, ex-wife Mary Pilcher Cook, daughter Jessica Welch, holding her daughter Holly, and her husband Mark Welch, holding Trenton. Julie Martin and Jessica Welch may have the gene that causes the disease, and Welch's children may also be carriers. The family members live in the Kansas City area.

The 29-year-old Lawrence resident is taking steps to ensure the well-being of her children.

And she is thinking about suicide. She doesn't want to be a burden to her family. She doesn't want her daughters to see her wasting away.

Wright's father, who passed the disease on to her, spent years in a Topeka hospital hooked to a feeding tube before his deteriorating body finally gave out. His mother died with Huntington's in a mental institution in Texas.

"Every morning I wake up in pain, and I go to bed in pain," Wright said, tears rolling down her cheeks. "I don't think it's right. I'm ready to go, and I don't want to spend 12 years as a veggie. I don't want to be a burden on my family. With this, there's no hope, and tomorrow will be even worse.

"My doctor said to try to live every day as if it's the last. But the girls would be better off not seeing me deteriorate. This is even more horrifying than suicide."

Wright has lost muscle tone in her right leg. She has mood swings, and her gait is unsteady.

"Sometimes, I have the shakes. Sometimes I have memory problems. I have involuntary movements if I don't take my medicines," she said.

Eventually, the disease will affect Wright's ability to think, speak and walk. In most cases, a Huntington's patient will not die of the disease, but will instead succumb to pneumonia, heart failure or other complications.

There is no cure for Huntington's. Every child of a parent who has Huntington's, has a 50-50 chance of inheriting the gene that causes the disease. The only way to stop the disease is for those who carry the gene to not have children.

A degenerative disease known as Huntington's chorea means Heidi Wright, 29, is in pain for much of the day. The mother of two girls, now 8 and 11, fears for what the future may bring: "I don't want to be a burden on my family."

Ken McElheney, Wright's longtime friend, is her caretaker. He is paid through Independence Inc. to take her to doctor appointments, cook meals and help with daily hygiene and other activities. Wright has taken the necessary legal procedures to designate McElheney as the children's guardian when she is no longer able to make sound decisions about their welfare.

"Ken deserves an award for all he does," she said, tears welling up in her eyes again. "He quit his own job to take care of me. He's constantly taking care of me and the girls."

Wright plans to visit with a priest "to ask God for forgiveness for whatever I've done" and has decided to donate her brain to the Huntington's Chorea Foundation for research so "maybe my kids won't have to go through this."

"We can't test the kids until they are 18, but they need to know before they have kids," Wright said.

"There's no way you can prepare anyone for this. You're going to die and there's nothing that can be done. They say your mind doesn't know when you're going to die but your soul does."

A family matter

While she doesn't advocate suicide, state legislator Mary Pilcher Cook, R-Shawnee, understands why a Huntington's patient may want to end his or her life. Her ex-husband, John Patrick Martin, killed himself after the disease began consuming his mind and body.

Cook remembers her ex-husband's reaction when they brought his father, who had Huntington's, into their home before he died.

Sara Schmanke, diagnosed with Huntington's in October 1999, finds solace in her religious faith and sense of humor. Her husband, dean, says the fatal disease "is part of life." The rural Baldwin couple have decided not to have children.

"My ex-husband would give him showers and cut his fingernails and shave him. It was bad for him to see his dad go through that," she said.

The disease has taken a toll on the Martin family, said Narayana Martin, John Patrick's brother.

"There's a dose of pride in our family, especially for the ones who came down with the disease," he said. "They're embarrassed they need the care in the first place.

"There's a mountain of inconvenience for those involved. There's a sense of duty, of being grateful you're not in their shoes, compassion. The pride issue is that you wouldn't want to be a burden through it. The outlook is so bleak that you assume you would be nothing but a burden."

John Patrick Martin was diagnosed as having Huntington's in May 1999, when he was in his early 40s.

"The rest of us knew of it for some time. He was in strong denial," Cook said.

As early as 1984, Cook began to see personality changes in her then-husband. He could not control his anger and became physically violent. He began making unsound business decisions and grew argumentative.

As time passed, he became paranoid and depressed.

	www.slayingthe hddragon.com www.hdac.org

"He never really admitted he had it," daughter Jessica Welch, 25, said of her father. "A couple of weeks before he died, I took him to the doctor (to be diagnosed)."

John Patrick Martin shot himself in June 1999. It was a calculated suicide: He laid a tarp down on the kitchen floor of his apartment, called the police and told them shots had been fired. There was no note. The trash had been taken out, and his clothes had been washed.

"I felt guilty because I had been a part in his diagnosis," Welch said. "I'm trying to realize it had nothing to do with me."

Narayana Martin said he has another brother and three sisters at risk for Huntington's. Cook's children with John Patrick Martin Welch, Julie Martin, 17, and Jason Martin, 23 may have the gene that causes Huntington's. And Welch's two children Trenton, 4, and Holly, 18 months also may be carriers.

"I want to know that I don't have it, not that I do," Welch said. "Right now, I'm in a good mental state and I would not treat the disease as a death sentence. There would be some relief to know and have some closure on the unknown. If I have this disease, I want to take it in a whole new direction. You can live years and touch a lot of lives. Who knows, hopefully they will have a cure in a few years."

Relying on faith

Sara Schmanke, rural Baldwin, was diagnosed with Huntington's in October 1999. Her mother was taken to a nursing home when Schmanke was 2 because of Huntington's. Of the 10 children in her family, she said, three have been diagnosed with the disease.

"I knew something was wrong," she said, referring to the involuntary movements and forgetfulness she was experiencing in 1999. "I probably cried for three days (after being diagnosed). I said I could feel sorry for myself, but my spirituality brought me closer to God and my faith."

Dean Schmanke, her husband, said the diagnosis has changed the way he and his wife communicate. He understands now why she sometimes can't remember their conversations, and why she is sometimes argumentative. He has learned to repeat conversations and to offer reminders.

They know that as her coordination and gait become unsteady she will need to use a shower chair and a coffee cup with a large handle. She will need to avoid grisly food, which can cause her to choke.

"Before we got married, she told me of the possibilities," said Dean Schmanke, a volunteer firefighter and student at Calvary Chapel Bible College near Baldwin. "Her oldest sister was in the late stages of Huntington's disease. I didn't see her until five or six years ago. She was in a wheelchair and was being fed and taken care of. I saw the end result, and it became real to me.

"But at the same time, I could get cancer or get killed in a car wreck. This is part of life, and things people go through. How many are diagnosed with cancer in a day, how many get shot to death everybody dies. It's the end result for everybody."

Sara Schmanke doesn't keep her disease a secret from her friends or co-workers at Allen Press, where she has worked for five years.

"A year and a half ago when I was diagnosed I told Allen Press," she said. "At that time, we discussed how I wanted to handle it. I don't want to hide that I have this disease. Therefore, everyone around me knows about HD."

Her co-workers offer support and help relieve her stress by joking about her symptoms. One day, her co-workers poked fun at her forgetfulness by putting labels on everything: "Phone," "Speak This End," "Listen This End," "Adding Machine," "Picture of Husband Dean," "File Cabinet," "Computer."

She also jokes about her condition.

"I just can't do neurosurgery, which I'm really upset with," she said with a laugh.

The Schmankes have decided not to have children. She volunteers with a horse therapy program for children and is involved in a jail ministry program through Calvary Chapel.

"When you see people worse off that you are, you don't have time for a pity party," she said. "This disease was given to me by God but not because I've done anything bad."