Menkes syndrome

Copper transport disease; Hypocupremia, Congenital; Kinky Hair Syndrome; Menkea syndrome; MK - Menkes syndrome; MNK - Menkes syndrome; Steely Hair Syndrome

Pictures

Landon is a very sweet boy Here is what I cut about Menke s Disease also known as kinky hair syndrome Menkes disease is caused by a defective gene that regulates the metabolism of copper in the body The disease primarily affects male infants Copper accumulates at abnormally low levels in the liver and brain but at higher than normal levels in the kidney and intestinal lining Affected infants may be born prematurely but appear healthy at birth and develop normally for 6 to 8 weeks Then symptoms begin including floppy muscle tone seizures and failure to thrive Menkes disease is also characterized by subnormal body temperature and strikingly peculiar hair which is kinky colorless or steel colored and breaks easily There is often extensive neurodegeneration in the gray matter of the brain Arteries in the brain may also be twisted with frayed and split inner walls This can lead to rupture or blockage of the arteries Weakened bones osteoporosis may result in fractures

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williams syndrome jpg

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Landon

Landon My Little Hero

Explore July 25 2008 382 My name is Landon Shaffer and I have a disorder called Menke s disease It prevents me from doing a lot of things normal kids my age can do like walk crawl talk and sit up on my own It s okay though because I have a mommy and a daddy that spoil me pretty good All I have to do is cry and they will give me whatever I want Pretty cool I really don t know for sure what this disease does to me and what will happen but God does and I live for Him everyday He helps me when the nurses try to stick me with needles when mommy and daddy given me shots and when I have to have my bladder emptied I don t let many things bother me I just try to stay happy My smile speaks a thousand words sometimes my mommy will just looks at me and cries I like to talk with my eyes too so if you think you are getting a story by looking at me you are There are deep words spoken by the look on my face Please don t be sad for me because God made me this way and I don t know any better way to live

Landon My Little Hero Published

This photo will be published in a high school science book in Denmark My name is Landon Shaffer and I have a disorder called Menke s disease It prevents me from doing a lot of things normal kids my age can do like walk crawl talk and sit up on my own It s okay though because I have a mommy and a daddy that spoil me pretty good All I have to do is cry and they will give me whatever I want Pretty cool I really don t know for sure what this disease does to me and what will happen but God does and I live for Him everyday He helps me when the nurses try to stick me with needles when mommy and daddy given me shots and when I have to have my bladder emptied I don t let many things bother me I just try to stay happy My smile speaks a thousand words sometimes my mommy will just looks at me and cries I like to talk with my eyes too so if you think you are getting a story by looking at me you are There are deep words spoken by the look on my face Please don t be sad for me because God made me this way and I don t know any better way to live

Landon My Little Hero

My name is Landon Shaffer and I have a disorder called Menke s disease It prevents me from doing a lot of things normal kids my age can do like walk crawl talk and sit up on my own It s okay though because I have a mommy and a daddy that spoil me pretty good All I have to do is cry and they will give me whatever I want Pretty cool I really don t know for sure what this disease does to me and what will happen but God does and I live for Him everyday He helps me when the nurses try to stick me with needles when mommy and daddy given me shots and when I have to have my bladder emptied I don t let many things bother me I just try to stay happy My smile speaks a thousand words sometimes my mommy will just looks at me and cries I like to talk with my eyes too so if you think you are getting a story by looking at me you are There are deep words spoken by the look on my face Please don t be sad for me because God made me this way and I don t know any better way to live