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My Godson, Everett, is getting close to the end. He is to turn 4 on the 27th, but it doesn'l look as if he'll make it. His parents are strong and doing their best to keep him comfortable. I visited him on Monday and he slept quietly most of the time.
He has Zellweger syndrome, a disorder similar to Krabbe Disease, like Hunter Kelly. On Saturday, his Hospice nurse thought he only had a few days left. As of this morning, he continues to sleep, most of the time peacefully. He drinks only a few ounce of formula a day and continues to get thinner and thinner. Please pray for this Angel to have peace.
Thanks,
Scott
Zellweger syndrome is a rare, congenital disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome, like Krabbe Disease, is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering--which acts as an insulator--on nerve fibers in the brain. The most common features of Zellweger syndrome include an enlarged liver, high levels of iron and copper in the blood, and vision disturbances. Some affected infants may show prenatal growth failure. Symptoms at birth may include lack of muscle tone and an inability to move. Other symptoms may include unusual facial characteristics, mental ******ation, seizures, and an inability to suck and/or swallow. Jaundice and gastrointestinal bleeding may also occur. There is no cure for Zellweger syndrome, nor is there a standard course of treatment. Infections should be guarded against to prevent such complications as pneumonia and respiratory distress. Other treatment is symptomatic and supportive. The prognosis for individuals with Zellweger syndrome is poor. Death usually occurs within 6 months after onset, and may be caused by respiratory distress, gastrointestinal bleeding, or liver failure.
He has Zellweger syndrome, a disorder similar to Krabbe Disease, like Hunter Kelly. On Saturday, his Hospice nurse thought he only had a few days left. As of this morning, he continues to sleep, most of the time peacefully. He drinks only a few ounce of formula a day and continues to get thinner and thinner. Please pray for this Angel to have peace.
Thanks,
Scott
Zellweger syndrome is a rare, congenital disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. Zellweger syndrome, like Krabbe Disease, is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty covering--which acts as an insulator--on nerve fibers in the brain. The most common features of Zellweger syndrome include an enlarged liver, high levels of iron and copper in the blood, and vision disturbances. Some affected infants may show prenatal growth failure. Symptoms at birth may include lack of muscle tone and an inability to move. Other symptoms may include unusual facial characteristics, mental ******ation, seizures, and an inability to suck and/or swallow. Jaundice and gastrointestinal bleeding may also occur. There is no cure for Zellweger syndrome, nor is there a standard course of treatment. Infections should be guarded against to prevent such complications as pneumonia and respiratory distress. Other treatment is symptomatic and supportive. The prognosis for individuals with Zellweger syndrome is poor. Death usually occurs within 6 months after onset, and may be caused by respiratory distress, gastrointestinal bleeding, or liver failure.
I'll pray for all of you.
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