ARLINGTON -- Grieving widow Michelle Killinger knows despair.
First her husband, Arlington police Lt. David Killinger, died suddenly about two months ago after injuring his knee while on a family ski trip. An otherwise healthy man of 39, he "should not have died," she says.
Now Michelle Killinger, a 41-year-old Arlington police investigator, has to find a way to tell her 6-year-old son, Zach, that he has a fatal disease that will rob him of his eyesight, muscle control and, eventually, his mind.
"I can't go there with a 6-year-old who just lost his daddy," Killinger said. "He knows he has a vision problem. He knows he is going to see doctors and take vitamins to keep him healthy."
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But as a way to honor her husband's memory, and as a way of dealing with her own grief, Killinger has vowed to raise awareness and research funds for juvenile Batten disease, the rare genetic disease that has inflicted her son.
"I owe this to Zach and to Dave," Killinger said. "I intend to honor the commitment I had to Dave in raising our son as we planned -- loving life and enjoying every second while we could."
Killinger and her husband knew that something was wrong with their son when teachers in Kennedale told them he was having trouble seeing. They took their son for tests and continued with their lives.
Part of that was going on a family ski trip over spring break to New Mexico. David Killinger hurt his leg while on the trip but didn't die until he returned home, on March 31. The medical examiner has yet to rule on an official cause of death.
Then, two weeks later, Michelle Killinger was told that her son had Batten disease, a neurological disorder that appears in childhood. The diagnosis was not good.
"We haven't even really had time to process ... hardly begin the grieving process from Dave's death upon receiving this news," she said.
The disease is often fatal by the late teens or early 20s, according to the Beyond Batten Disease Foundation. "Typically, these are perfectly normal children until school age. They start having problems in school that can go on a number of years," said Dr. Sandra Hofmann, professor of internal medicine at the University of Texas Southwestern Medical Center at Dallas.
"Eventually the patients become demented and require nursing home care. There is no cure," said Hofmann, whose lab does research on the infantile form of the disease.
Hofmann said research on the disease is ongoing, but there is no reliable treatment. She said support groups give parents an outlet and a way to talk about how they can handle "a really tough situation."
Killinger said an uncle will accompany her and Zach to Rochester, N.Y., this weekend for treatment and to see a specialist. It coincides with the third annual International Batten Disease Awareness weekend.
She said it is tough facing Zach's disease. The supplements he takes are not entirely covered by health insurance, but she hopes they will help make the most of their time together.
"The goal that I have for Zach is to live as joyfully as we can for as long as we can," Killinger said.
To look at him, one wouldn't know that Zach is anything other than a typical boy. He likes to run, chase girls, play with trains, show off his toys and ice skate.
But when he is in his southwest Arlington home watching TV, he must sit inches from the screen. If he uses a computer, he needs special equipment to increase the size of the type and the images so he can see the monitor.
When asked what he is looking forward to most this summer, he is quick to respond: "Skating, birthday cake and presents." Zach turns 7 on June 21.
He is blissfully unaware, for now, of what the future holds, his mother said. Not having her husband to talk to about their son is unbearably hard, but she isn't alone.
"Michelle has a lot of very close friends in the department who support her," police spokeswoman Tiara Richard said. "She is more than just an officer, she's family, and it's amazing to see people in this department be essentially a family and step up to help Michelle in whatever way we can."
David Killinger had been with the department for 13 years when he died. Michelle is an 18-year veteran.
"Without the support of family and friends, my APD family, there just would be no walking through this," she said. "I don't know how other families make it through."
"The goal is to just live life," she said. "It's too short not to."