Litchfield — Nine-year-old Zachary Couture believes he’s just having trouble with his hearing. In reality, he has a rare progressive genetic disorder that has affected his hearing, speech and motor skills.
“I tried to explain it to him but he doesn’t care to know. It’s its own blessing in a way,” said Carl Couture about his son’s disorder, adrenoleukodystrophy or ALD.
ALD is an inherited metabolic disorder in which the fatty covering on nerve fibers in the brain is lost and degenerates the adrenal glands, leaving the body unable to break down big fat molecules. Paralysis and ultimately death are the result.
Zach Couture was diagnosed with ALD in early November and his family members are surprised by how quickly the disorder has taken its toll on him.
“It’s affected his walking, his speech, and he’s pretty much lost hearing and fine motor skills. A couple of times he’s had mood swings, which is a characteristic of the disorder,” said his aunt, Mary Allison Hobden. “But what bothers him the most is his hearing.”
Carl and Zach Couture flew out yesterday to the University of Minnesota in Minneapolis for a bone marrow transplant evaluation.
“Our best hope is a transplant would stop it and possibly reverse it like in a few other cases,” said Louise Hobden, the boy’s grandmother.
Carl Couture said he came into contact with the University of Minnesota, which told him new procedures were being developed to treat ALD, when he began to research the disorder on his own when told nothing could be done to save his son.
“There are about five doctors in the country that deal with ALD. I think once a month they should have a phone conference because it’s frustrating to hear one thing from one doctor and then another thing from another doctor,” he said.
Whether or not Zach Couture is eligible for a bone marrow transplant, his family has already begun raising money for the $250,000 procedure because they have yet to hear from his insurance provider, New Hampshire Healthy Kids, if it will be covered, said Louise Hobden.
Donations may be made to the Carl Couture Fund to Benefit Zach Couture at any Citizens Bank. When checked a few weeks ago, the fund had $1,100 in it. Louise Hobden said $1,000 came from another family in town that also had a sick child.
Mary Allison Hobden said she created a Web site, www.zachsspirit.com, so that others can learn more about her nephew and ALD.
The family also has contacted the Make-A-Wish Foundation about making the boy’s wish to ride inside a NASCAR racecar a reality. His favorite driver is Michael Waltrip.
In the meantime, Zach Couture still attends fourth grade at Griffin Memorial and enjoys baseball, basketball and playing video games. “We’re trying to keep things as normal as possible for him,” said Louise Hobden.
