BLOOMINGTON — Before she gave birth to a baby girl in the bathroom of a Bloomington homeless shelter, Tonya McKee had a life.
But it began to unravel about seven years ago when McKee showed symptoms of a disease that, so far, has ravaged at least three generations of her family.
McKee, 37, suffers from Huntington’s disease, a neurological disorder without a cure that has taken the lives of her paternal grandfather, father and a younger sister, say family members. A second sister currently suffers from the disease.
For McKee, the Huntington’s diagnosis was confirmed last week at a McLean County court hearing where she was determined to be unfit to stand trial on attempted murder charges related to the Sept. 25 birth of her daughter at Home Sweet Home Ministries. The charges accuse her of intentionally trying to kill the child — who was rescued by police officers — by leaving her in the toilet.
Despite the medical problems that have affected her mental abilities, McKee is able to recall many details of her childhood, growing up with her parents and three siblings in Waverly, a small town 30 miles west of Springfield, where she was an honor roll student and flutist in the school band.
Sitting in a chair with her knees tucked under her chin, McKee smiled easily as she talked during a recent interview with The Pantagraph at the jail. Her words, punctuated by a noticeable clicking sound, run together in long sentences that tend to end in questions, as if she is double checking the accuracy of her memory. Her unbalanced gait and failing muscle control make it hard to walk and do things as simple as hold eating utensils.
First in college
McKee leaned toward a career in art therapy, but wasn’t convinced of the job possibilities. So, she attended the University of Dayton and studied environmental sociology.
“I was the first person in my family to go to college,” she said.
After graduation, she worked at an outdoor program for troubled boys in New Hampshire before going to work as an administrative assistant in the neuroraudiology department of Johns Hopkins Hospital in Baltimore.
“I had a petty stable life,” said McKee.
But she was laid off from her job in 2007 and survived by staying in homeless shelters across the country when space was available and on some dangerous big city streets when shelters were full. She was mugged at gunpoint, slugged in the face and had her possessions stolen, she said.
While living in a bad neighborhood of Baltimore, McKee was attacked by several men.
“Luckily, I screamed. They hit me in the face and took my purse,” she said.
Living in denial
Huntington’s has haunted the McKee family for at least three generations. The decision to have children that frequently agonizes couples with the disease in their family history did not visit McKee’s parents because of an incorrect medical opinion, said McKee’s mother, Julitta East.
East and her husband were told that the disease could not be passed on to their children through her husband, who later died of Huntington’s.
“After four kids, we found out they were wrong,” said East, who has watched as three of her four children came down with the disease.
East was surprised when she learned of her daughter’s arrest but shocked to find out she had a child.
“That just floored me. She was always career-minded and liked children but never wanted any of her own because of Huntington’s,” said East.
When East learned of her daughter’s struggles, she questioned if Huntington’s disease was laying claim to yet another daughter.
“I could tell Tonya thought she had it. It was probably affecting her work,” said East. “After she lost the job at Johns Hopkins, she got little jobs working at a restaurant, then a gym, but she wouldn’t keep those jobs very long. I told her, ‘If you’re struggling so badly, maybe you should come back here.’ ”
So, McKee packed up and headed to her mother’s home in Quincy, but she rejected efforts by East and others to address her housing and medical issues.
With no success in finding work, McKee returned to the East Coast, but ended up back in Quincy in the spring of 2010.
“She stayed at The Salvation Army for a while, but she was mad. She wanted a job,” said East.
Again, the subject of Huntington’s came up. During a conversation in the car, East confronted her about being tested for the disease.
“She got out of the car and walked away when I was at a stop sign. She was in denial and didn’t want to find out. I can understand that” said East, who lost her husband at 41 and her daughter Hannah at 19 to the disease. She is caring for a second daughter, Erin, now 33, a Huntington’s patient for eight years. A son does not have the disease.
After several months in Peoria, McKee ended up in Bloomington in early 2011. She stayed at The Salvation Army’s Safe Harbor homeless shelter where she met and became involved with Eric Davis, also homeless at the time. She moved to the mission shelter several weeks before giving birth, according to court records.
McKee’s sense of reality becomes cloudy the closer her recollections come to her time in the Twin Cities. A lack of awareness of one’s situation is a symptom of Huntington’s disease, said Twin City lawyer Carla Barnes, who represents McKee with David Rumley.
McKee believes, for example, that she and Davis are still in the relationship that produced her baby even though the two split last summer. McKee’s erratic behavior contributed to the separation, said Davis, who hopes to obtain custody of the baby. The child is now living with a Twin City foster family.
McKee maintains she did not know she was pregnant until she went into labor and someone at Home Sweet Home called 911. Police statements say McKee asked for a doctor because she had aborted a baby.
She offered several explanations for the baby being in the toilet, including that she was unaware she had given birth and she couldn’t see the baby because she wasn’t wearing her glasses, said police.
Home Sweet Home and Safe Harbor staff will not comment on McKee’s connection to their shelters, citing resident confidentiality. Sabrina Burkiewicz, spokeswoman for Home Sweet Home, said about 15 pregnant women a year receive prenatal services and most stay on at the shelter with their children.
McKee also harbors the notion that she someday will be reunited with her daughter.
“It’s hard not being able to see her. I definitely want my baby back, but I know it’s a long process,” she said.
Coming Monday: Tonya McKee’s disease presents a unique challenge to the legal system that is charged with prosecuting her for attempted murder.