Friends, family rally to provide mobility
GOLD HILL — Family and friends are rallying around a local man who lost his sight last year, in hopes of providing a much needed mobility chair to help him maintain an active lifestyle and be able to spend time outdoors.
While he's battled a rare mitochondrial disorder his entire life — family and friends say with more patience than most people could muster — 35-year-old James West is having to dig a little deeper for patience these days.
Healthy for his first few years of life, the now 35-year-old began losing his hearing at the age of 6, followed by the development of tunnel vision, epilepsy and progressive muscle myopathy that all began showing up after the age of 12.
"A lot of people are born with it. His showed up later and was gradual," said West's mother Deb West, noting that the list of her son's more predominant health issues do little to fully describe the range of issues he faces on a daily basis.
West grew up in Grants Pass, raised guinea pigs in 4H and delivered the Daily Courier at age 9.
While he lived independently as a young adult, West returned to live with family members in recent years when muscle control, vision and hearing all began to fail and frequent falls left him all but housebound and in need of care.
Deb West said a special mobility chair would afford the family some freedom and a way to maneuver safely outside, avoiding dangerous falls that have been happening more frequently.
With a price tag of between $3,500 to $5,000 for the chair, friends and neighbors suggested crowd funding on youcaring.com.
"He can see shadows but his vision will continue to get worse," Deb West said. "With the muscle myopathy, he's pretty unsteady on his feet."
So unsteady, she points out, that the combination of near blindness and deteriorating muscles, coupled with sheer boredom at being trapped inside, contributed to his fall down the front steps of the family's home last month.
The accident yielded a broken nose, broken teeth and slew of other injuries to his face. While James was fairly unfazed, his mother said, she felt more resolved than ever to figure out how to get her son a set of wheels.
"We already go shopping based on which stores provide wheelchairs," said the mother, who also suffers from the same disorder as her son but to a lesser degree.
While chairs for children and seniors are easy to find, options for adults seem more limited.
James' brother Dan West said he hoped to see his brother regain some mobility, despite his condition.
"Due to his complicated medical circumstance, James has been denied nearly everything that in life that most people take for granted," he said. "Regardless, he seldom utters even a muttered complaint. He is the nicest guy you could ever hope to meet."
Berl Gilworth, a friend from the family's church who provides assistance for James when needed, said a safe way to get around would be a game changer for James.
"Sometimes he'll just pop up and go to the door because he just wants to go outside so bad, and you kind of have to follow him and make sure he doesn't fall down the stairs because the risk is so great that he will fall," Gilworth said.
Long term, Deb West said, she hopes to help fund equipment for other families who need it.
"There are a million services for kids with these disabilities and diseases — and that's utterly fantastic — but when they reach adulthood, all the help just dries up," she said.
"It's that magical age, between childhood and senior citizen age where there is no help. I'd like to get to a point I can try to change some of that."
For more information, see www.youcaring.com/james-west-550661/update/464161.
Reach freelance writer Buffy Pollock at firstname.lastname@example.org.