Traverse City Record-Eagle

Archive: Saturday

December 8, 2012

One day at a time: Parents' 20-year journey

Parents' 20-year journey of unconditional love

TRAVERSE CITY — Twenty years ago, Donna and Chris Miller brought home their first baby — a fair little boy with blonde curls and blue eyes.

Baby Jack rolled a few times at his 6-month mark, but Donna worried that he rarely squirmed or wiggled. She had to support his head while he nursed. Their pediatrician reassured them that some babies are just slower.

On a July day in 1992, 6-month-old Jack became overheated on a long car trip. The next day, he lost all body control and cried constantly. At Munson Medical Center, the Traverse City couple heard the grim news. Jack was afflicted with a virus and would never walk or talk.

"We cried and cried," Donna said. "Your dreams of having a normal kid ... that dream was suddenly, totally gone."

The doctors correctly predicted Jack would regress; each brain scan was worse than the one before.

But they were wrong about the virus. When Jack reached the age of 4½, his parents learned he suffered from Aicardi-Goutieres Syndrome, one of the world's rarest genetic diseases. At the time, his was the second diagnosed case in the United States.

When Donna became pregnant again some 2½ years later, the geneticist still assumed Jack had a virus and anticipated no problems. But Benjamin, born in 1995, was afflicted even more severely.

So how does a couple cope with the knowledge that their sons will physically and mentally regress with no hope of a single word or step?

The Millers recently shared the 20-year journey of their life with Benjamin and Jack: sleepless nights, breathing machines, midnight medical alarms, seizures and surgeries, along with mounds of paperwork, school issues and medical appeals.

The couple confided they have leaned on their deep sense of faith and belief in unconditional love.

"One. Day. At. A. Time. You never let yourself think about the future," Donna said. "Faith gives me the ability to love a child and know that there will be a time and place they can finally run and play."

Chris, 48, said support from church members has made all the difference. They accept the boys, talk to them, and even helped build a handicap-accessible addition to the back of their house.

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