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.
Donna, now 46, had been working as a teacher. Her sons' medical needs have made it impossible to work outside the home.
Donna's mother is the only surviving parent between them and lives in Grand Rapids. She provides a place to stay on their many medical trips, but can't come up to help.
"I was alone with Jack. It was hard to take him places," Donna said. "When you have a 3-year-old that can't sit up, you can't put them in a grocery cart."
The Millers qualified for respite help, but Jack's chronic crying from pain made it hard to find someone to care for him. Relief came with a new formula when he was 16 months old and Jack's crying mostly subsided. He rewarded them with his first smile two months later.
Ben showed the same symptoms as Jack, only more severely. The Millers took him to a University of Michigan pediatrician, who had no answers, but handed them an article about Aicardi-Goutieres syndrome.
The Millers wrote to the article's author in England, who then connected them with Dr. Pierre Lebon in France Soon after, they had a spinal tap performed on Jack and sent the fluid to France.
"That gave us the diagnosis," Donna said. "It was really pretty dire. But we had an answer, we had a name."
The diagnosis and the more severe respiratory problems suffered by Benjamin opened the door for two part-time aides, assistance from Northern Lakes Community Mental Health and Medicaid insurance.
It also gained them entry into the hidden world of families whose children suffer from the same rare disease. There were 32 families worldwide then, and close to 300 families now. They've attended six conferences in Italy and Washington, D.C. Their most recent journey in October required a two-van caravan to accommodate all the equipment and a stop every two hours for diaper changes and breathing treatments.
"We have to rely on a friendly gas station to use their outlets," Chris said. "Only one ever gave us a problem."
A typical day
Chris and Donna rise at 5:15 a.m. Chris starts the breathing treatments while Donna prepares medications that are put into the feeding tubes. Medical equipment abounds in their sparely furnished home that's been stripped of carpeting to eliminate dust. The playroom ceiling is covered with bright graphics for the boys to gaze at as they lie on the floor.
All the while, they chat.
"Time to get your diaper changed."
"Let's get into your wheelchair now."
When Donna fondly touches Benjamin's hair, he smiles, then grimaces and cries — an involuntary reflex.
After the boys leave for school, Donna catches up on sleep and chores. Chris drives to his programming job in Cadillac.
Donna is grateful for school, but worries. Since November 2011, there have been five ambulance trips from school to the hospital.
Once home, Donna and the two young aides treat the boys with their favorite stimuli. Jack laughs at squeaky doors. Ben's face lights up when he hears chimes or harps.
Donna's has copious instructions for the aides. She admits to control issues, but believes her attention to detail has kept the boys alive.
Even at night, the Millers can't relax. Pulse oximeters alert them to any problems.
In reality, few days are typical. The boys' medical problems are escalating. Jack was in extreme pain for years from an arthritic hip. They opted for surgery in July even though they knew he might not survive.
Ben has had bouts of fevers, but emergency room doctors last week couldn't say why.
Any stress, such as illness — even vaccinations — results in regression. Benjamin's brain lost its ability to interpret what he was seeing (cortical blindness) and he nearly lost his life at age 5 shortly after botox shots were given to loosen his leg muscles.
The specter of the boys' short life span creates complicated feelings.
"You feel guilty because you know they'll be gone and that's when our life will change," Donna said. "Sometimes you get very tired of this. It's ongoing and I don't know when it will end.
"But I don't want it to end because it will be very sad."