A friend of mine has a very beautiful baby girl; I am sharing her story; in the hope that it will increase awareness of the syndrome and perhaps in the spirit of the season; a donation could be made?!! This is what my Daughter Elyarra has she was diagnosed with this at 2 and a half months old : Alagille Syndrome is a rare genetic disorder that can affect the liver, heart, and other parts of the body. Approximately one in every 70,000 children is born with Alagille Syndrome. In patients with Alagille Syndrome, the bile ducts are abnormally narrow, malformed and reduced in number. This prevents the bile ducts from carrying bile, which helps to digest fats, from the liver to the gallbladder and small intestine. :this fist picture is from when she was about 4 months old she has a nose feeding tube to help her eat she was about 7 pounds the 2 picture is today she is 14 months she now has micky feeding tube and is on a different kind of formula as well as medication and vitamins she is starting to slowly put on weight, she is now 17 pounds Through hard times and good times Our family feel blessed to have this little girl in our lives. Our family and other families need your help Because the symptoms of Alagille syndrome vary and because the syndrome is so rare, the disorder can be difficult to diagnose. this syndrome is so rare that there is little Research on it so please donate to the Alliance for researching Alagilles. liver.ca/liver_disease/childrens_liver_diseases/alagille_syndrome.aspx
Posted on: Sat, 23 Nov 2013 05:52:00 +0000
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