ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Lawton-area boy's sensitivity to chemicals leaves parents pleading for change in roadwork plans
Tuesday 10 January 2012
LAWTON — They monitor the fiber content of his bed sheets, check the makeup of the paste that goes on his toothbrush and drive him 45 minutes to a preschool that promises to clean only with the cleaners they buy at their own expense.
Parents January Slater and Ben Khabra are rabidly green on behalf of their 4-year-old son, Jackson, not because of political leanings but because Jackson's medical condition requires that level of diligence.
Jackson has autism and a condition called multiple chemical sensitivity. He suffers extreme reactions to minute exposures to common chemicals, his mother said.
Because of their son's condition, a local road-paving project has thrust the family into crisis, leaving Jackson's parents wondering if the family will be able to stay in their home.
Paving the road in front of their house, Khabra said, "will cause huge problems for Jackson."
It already has.
To the Van Buren County Road Commission, the work on the dirt road in Porter Township where the family lives is routine. A stretch of 32nd Street near County Road 669 is slated for paving at some point and is being widened now to prepare for the work.
Trees were pulled and brush cleared and burned, which forced the family to flee to Ottawa for more than 10 days until most of the burning had subsided. Smoke and mold are two pollutants that make Jackson sick, Khabra said.
Road Commission Engineer-Manager Lawrence Hummel said the agency and contractor have tried to make concessions for Jackson's condition.
"We knew what the concerns were," Hummel said. "I think our staff and the contractors handled themselves appropriately."
The tree burning has been done when the wind blows away from Jackson's home. "It never did go that direction," Hummel said. "The wind was always from the south-southwest."
That courtesy, while appreciated, was not enough. Jackson has suffered health issues since his return home, even though only a few log pilesare smoldering, Khabra said.
The parents realize it's hard for others to understand just how low Jackson's threshold of sensitivity is. His condition is not recognized by the American Medical Association, but their son's symptoms are immediate and severe.
For example, a 10-minute trip to a flooring store ended with Jackson foaming at the mouth and vomiting for hours.
When a family friend recently visited Jackson wearing perfume, Khabra sad, "We noticed that right away and asked if she could come back" another time, perfume-free.
Just as parents protect their diabetic children from well-meaning offers of candy, "those are the types of things we have to voice," he said. "It may offend people, but we've seen the repercussions of not saying anything."
'He's fought bravely'
When Jackson's parents heard the road near their house was to be paved with asphalt, Khabra went to the Road Commission to ask if alternative, natural, road treatments could be considered instead, such as upgrading the road to gravel or using bioasphalt, which are more natural materials.
It appears those materials are not available here, Khabra was told.
But he did learn of the more immediate threat: the plan to burn the huge pile of trees cleared for the roadwork, Khabra said.
The family recently pulled Jackson out of preschool for 12 days and went to Ottawa, where the boy's grandparents maintain a chemical-free home, Khabra said.
"We had to pull him out of school, his therapies and spend money we didn't have at the time," he said. "He was doing so well, and since we have been back he has struggled."
Khabra said his son "is a great kid. Everyone loves him, and he's fought bravely."
He said their family life revolves around his condition.
"We spend a lot of time and effort to make our home safe for Jackson, but we don't expect others to accommodate us," he said.
Still, he said, it's possible Jackson's unusual condition might serve as a warning to all parents that we live in a toxic world. "It's not noticeable for most children, but I'd be worried about exposure and cumulative long-term effects," Khabra said.
"We know people see Jackson as the exception, and he is, in the sense of how absolutely devastating these things are to him. But I think there is something to be learned here."
So far, the lesson has fallen on deaf ears.
"I'm not a fan of any kind of burning — that's an archaic way of disposing of waste," said Mary Douglas, of the Michigan Department of Environmental Quality's Kalamazoo District's Air Quality Division.
"But that's the law. We feel for any child that has health issues and is exposed to something like that, but everything that's been done has been in accordance with the law, so there's nothing we can do."
Hummel said "it might be several years" before the road is paved, and any changes to the plan would have to be made by Portage Township officials.
"We've felt disappointed in the response we've gotten from people," Khabra said. "We feel like we're the first people who would help out a family on our street or in this town. Some people have expressed empathy, but are not able to do anything; others have no concern at all, which has been frustrating, since we're just trying to produce a healthy environment for our son."
One individual at the Road Commission did call and inform the family that a huge pile of stumps, left from the tree and brush removal, was tentatively scheduled to be burned soon.
"My wife started crying," Khabra said. "We pleaded with the contractor to delay the next large burn until we can get out of town."
The stump project has been delayed until later this winter, he said, and his wife has purchased a snow globe for the daughter of that employee, who reached out on his own to help. But it's hard to be optimistic, Khabra said.
"We've kind of come to terms with what's going to happen, and there's probably nothing we can do. Perhaps our future was meant to be elsewhere," he said.
The above, with comments, originally appeared here.
blog comments powered by Disqus