October 18, 2012
Heidi Ellen Wright
Paskel LeRoy Wright b. Sept. 9, 1937 d. Nov. 17, 1993 and
Esther Dene Levine b. Sept. 2, 1940 d. Aug. 23, 2001
She and her life time friend, Ken McElheney had:
Amanda Wright b.1990
Sarah Wright b. 1993
Heidi was only 33 years old when she passed away with Huntington's Disease carried on by the gene that also took her father and grandmother and many others in our family tree.
"Huntington's always fatal, but patients' outlooks vary"
published by LJWorld.com on August 4, 2001, 5 years before Heidi passed away...
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 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.
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."
Heidi Ellen Wright was cremated . She was James 2nd Cousin.