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Information and Items of Interest In the future this section of our website will include articles of interest and excerpts of stories from our book God’s Golden Children. Our Own Stories are Available Here Information on obtaining copies of this informative and inspirational book written by both people with Crigler-Najjar and the families of children afflicted with this disorder can be found below.
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Special 4-Foot Phototherapy Light Units Required But Not Available in the US! You would not think a 4-foot phototherapy light is a big deal, until you try to find one. They are not available commercially in the US. CNS patients sleep under these special lights at night. The special blue spectrum light rays turn the bilirubin in the skin into a harmless form that can then be eliminated by the body. The lights are bright but they keep our children alive. 2-foot lights are available commercially for babies and infants, however there is nothing large enough to treat a child or adult. Some of these units cost $30,000! Prior to the use of phototherapy, children with Crigler-Najjar did not live beyond a few years. As these kids have grown older, larger lights are needed and as larger lights are unavailable, custom built 4-foot phototherapy lights must be made. 12 special blue spectrum fluorescent bulbs are used in a bank of lights. Each bulb can cost as much as $30 and bulbs only have an effective life of 3 to 4 months before they must be changed. If you or someone you know needs a 4-foot phototherapy light, we have a parent with children with CNS that makes them for his family and others on an individual basis. |
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Please contact: |
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Floyd Martin |
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(570) 966-3814 |
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e-mail: martink@mailstation.com |
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ANNOUNCEMENT FOR CNS FAMILIES A Great Deal on Phillips Brand Bulbs! Floyd Martin has located a fantastic deal on Phillips brand 4-foot blue spectrum fluorescent bulbs (part number F40BB). Based on a non-scientific experiment with sophisiticated testing equipment used by one of our parents, Phillips brand bulbs were shown to produce the brightest and best spectrum of blue light. At an unbelievable price of only $18 each (plus cost of shipping UPS) stock up now! If you are interested contact Floyd using the information above. |
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