Julie Hall was married at 18 and became a mother a year later. With her husband at her side, her twin boys were born in Walnut Creek on Nov. 17, 1990.
For the first two years, everything was fine, except the boys were slow to walk. Gradually, other symptoms emerged, and when Ryan and Joshua were 2½ years old, Julie and her husband were given a stunning diagnosis. Both of their sons, growing up in Concord, had Duchenne muscular dystrophy, a fatal disease that strikes male children.
Julie Hall had not known that she was a carrier for MD even though her older brother David died of the disease when he was 14 and she was 10. Tests at the time mistakenly showed that Julie did not have the gene that would endanger any children she might have, so the young couple was completely unprepared for this devastating news.
The boys were enrolled in special education preschool at age 3, and while that was helpful, they missed many developmental milestones. Muscular strength and coordination became a big problem and, as the boys grew and their needs became greater, the strain took its toll on the marriage.
By the time the boys were confined to wheelchairs at age 9, their father had left the family, and Julie was left to manage alone at their home in Valley Springs, about 25 miles northeast of Stockton.
As the years went by, the boys' lives became more and more compromised by their illness, and the simple act of breathing became
Both brothers have been hospitalized numerous times over the years with life-threatening infections, and it is hard for the one left at home to stay cheerful while his brother is gone. Ryan went into a depression last year when Joshua lay hospitalized in a coma for more than four days and remained away from home for nine weeks.
"This is a vicious disease," said Julie as she enjoyed a break outside while Ryan and Josh played a computer game with their nurses. She loves her sons and finds it hard to speak of the future, which for them is uncertain at best.
"I take it one day at a time," she said. "I get through it by not talking about it. I don't want to deal with it."
Josh and Ryan are what are called "mirror image" twins, a rare occurrence in which they are identical in reverse, as in a mirror reflection. One twin is right-handed, the other left-handed. Both have scoliosis in their spines, but one's spine curves to the right, and the other to the left. Because of the scoliosis, in November 2006, they had to undergo spinal fusion surgeries at Shriner's Hospital in Sacramento, a 14-hour operation for each.
Last year, the twins were supplied with new power wheelchairs that tilt, recline and can be steered with joy sticks that Ryan and Josh can operate easily in spite of the paralysis in their hands and arms.Two nurses come to help out for several hours every day, and a lot of good-natured banter is exchanged as the nurses assist Julie with bathing her sons and performing other tasks to maintain their health. The garage has been converted to a large bathing area where a Hoyer lift is used three times a week to move each brother from his chair to an oversize tub of warm water. The tub, converted from a livestock trough, was a fabulous idea, says Julie.
Ryan and Josh remain in good spirits most of the time, and when asked about their situation, Josh's response was simple.
"We don't feel sorry for ourselves and we don't want anybody else to feel sorry for us, either." Ryan agreed, saying, "Just because you have a disability doesn't mean your life is miserable."
In spite of the upbeat outlook the family strives to maintain, the fact that Julie cannot take her sons anywhere weighs heavily on her. Josh and Ryan speak wistfully of getting out of the house and seeing some of the beautiful scenery that California has to offer. A trip to the ocean, to Lake Tahoe, a ball game, maybe even someday a visit to the Grand Canyon would be thrilling. Car trips were easy when the brothers were younger, but now their wheelchairs and breathing equipment take up so much room that Julie would need a large van to transport them.
In November, Joshua and Ryan celebrated their 22nd birthdays.
Contact Linda Field at firstname.lastname@example.org.