If you or someone you know who's child has EB and will benifit from the blessing of school supplies please email us and we will try our best to get the child everything they need.
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Georgia was born with a rare skin disorder called Non Bullous Congenital Ichthyosiform Erythroderma. Georgia Spent nine days in the NICU in a Tennessee hospital and was born 8 weeks early. She is a bubbly 4 year old who is defeating the odds every day that the doctors gave.
Breif Summary of Congenital Itchthyosiform Erythroderma
The baby is often born in a collodion membrane, a shiny, wax outer layer on the skin and usually with ectropion, having the lower eyelid turned outwards. When the membrane is shed the skin is red with a generalized white scale. Palms, soles and areas on the joints are often affected with hyperkeratosis, a thickening of the layer of dead skin cells on the surface of the skin. In classical CIE (unlike LI) there is little eclabion (eversion of the lips), ectropion and alopecia (hair loss).
You can follow Georgia by visiting her Facebook page HERE
Sami was born in 2002 with a rare genetic skin condition called Epidermolysis Bullosa Simplex. She has the Dowling Meara sub type which is the most severe sub type of EB Simplex. Her brother Joey is her youngest brother and he was born in March of 2011 and he too has EB Simplex Dowling Meara. They also have two sisters who are EB free and a brother, Garrett, who passed away from complications of EB in 2004 when he was 12 days old.
You can follow Sami and Joey's story by visiting their Facebook page HERE
total families helped: 2
last update 8-8-13