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$2,000 of $5,450
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18 donations

This fundraiser ended on 11/25/12

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The Family and friends are uniting to raise money to help Savannah with her medical expenses due to her Alagille Syndrome.

Family and friends are uniting to help Savannah who has been diagnosed with Alagille Syndrome. What is Alagille Syndrome you ask, well it is a condition affecting the liver, heart, kidney, spine, eye and other organs that is caused by changes (mutations) in a gene called “Jagged 1.”
In Savannah’s case her Alagille was diagnosed when she was 2 months old. We had to go to Denver, Colorado, on an emergency case, for her Pediatrician at first thought she had Biliary Atresia, which means the bile from her liver was not flowing out through the bile ducts, thus damaging the liver, which would have caused her to have a procedure called a Kasai, where they attach the small intestine directly to the liver. But when we arrived at the Hospital at 11:00pm after a 5 hour drive from where we live in Gillette, Wyoming. They started test on her. After several blood test and different ultra sounds and xrays, they were able to diagnose her with Alagille. Savannah’s bile ducts in her liver are starting to disappear, which causes a lack of bile flow, which causes Jaundice, a yellowing of the skin and eyes. Savannah was born right at the bottom of the normal weight scale at 5lb 8 ounces, but her weight increase is slow, she is now 5 months old and only weighs 8lbs.7ounces, the doctors want her back up into the normal range of weight of around just over 10 lbs. She has to be on special formula called progestimil, which has MCT (medium chain triglyceride) oil, which is much better for her to absorb enough fat and the fat soluble vitamins (A, D, E and K), that help with the inadequate levels of bile salts getting into the intestine which leads to poor growth and malnutrition. She has been put on a feeding tube which goes through her nose and down into her stomach, then at night we will have to feed her through the tube with a pump, while she sleeps, so she can get more food through her. She will possibly be on a feeding tube for 2 to 6 months.
Savannah also has a heart murmur, because she has a narrowing of the arteries on both sides of her heart, to her lungs. The doctors say that everything is okay for now but they will monitor her heart, with ultra sounds to make sure the narrowing hasn’t narrowed any more. If the arteries narrow more, then they will have to go in with stints and balloons and try to blow the arteries back into shape.
Savannah’s Kidneys are small, not quite fully developed, the doctors said that there is nothing to worry about right now, they want to just monitor them with ultra sounds to see if they will grow as she get older and gains weight. Her eyes have a white line that has formed at the edge of her corneas, the doctor says there is nothing to worry about for it does not affect her vision, it was another way to help identify that she has Alagille Syndrome, but they do want to keep an observation on her eyes, so we will have to visit the eye doctor at least once a year.
Savannah has to take medicine for her liver called Ursodiol, which helps reduce blood cholesterol levels and jaundice, also she has to take a vitamin supplement that helps with her vitamins, A, D, E and K.
In cases of Alagille, there is a chance later on in life and in some cases earlier, the patient will have to get a liver transplant.
We are fortunate so far that some of the doctors like the Cardiologist, and the Gastrointestinal doctors come up to Gillette, Wyoming. But we have to go to Denver Colorado to see the Nephrologists and the Ophthalmologist and we have had to stay in the hospital in Denver and Aurora Colorado, once for the initial diagnosis of her Alagille, when we had to stay for 10 days and then another for when they installed the feeding tube for another 8 days. With the expenses of traveling to Denver, Colorado and back home and the stays in the hospitals it has put a strain on our income, bills are mounting and I worry from day to day on how we going to pay for everything.
There is no cure for Alagille syndrome, just with medications and improving nutrition, leads to an improved quality of life.

Just added Paypal as an option, if you feel more comfortable making a donation through them.

If you have any questions or suggestions or just need to contact the family representative you may call Todd Curington (Savannah's Father). at 307-670-3659 or email at toddcur@yahoo.com

If you want to send a donation by mail, please send checks attention: Todd Curington

704 Kiowa Ave
Gillette, Wy.82718

Thank you all for your prayers and support and donations.
God bless you.
Savannah Curington
Parents Todd and Sheryl Curington
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