I am sharing my baby’s story with all who will read it. I am a 26 year old, mother of 4, living in the Okatie, South Carolina area. My little Ana Maria, who is 21 months old, has been diagnosed with hyperlipidemia, hypertrygliceridemia, gastroesophageal reflux disease, and failure-to-thrive. In her short life she has undergone multiple testing to determine the cause of her eating disability. Her doctors felt that correcting the GERD seemed to be the answer. On May 31, 2005, she underwent a major stomach surgery called a Nissen Fundoplication (a.k.a. a stomach wrap). During this surgery the pediatric surgeon also placed a gastric tube, just as a precaution incase the surgery did not fix the eating disorder. Ana was supposed to be in Backus children’s hospital for 2 or 3 days. She was there 10 days. After surgery the doctors waited for her to start eating. Four days after surgery Ana could no longer walk or stand due to weakness. She did not show any signs of hunger or thirst. On day 4 or 5 they finally began tube feeds. Ana will ask for food when others are eating, and she will sit at the table. However she will only eat a few bites. Most of the times she chews it then spits it back out. Ana Maria’s specialists feel she needs to be evaluated and treated at Kennedy Krieger Institute. This Center for Excellence is one of few. They can offer her the best care and hopefully diagnose her lack of hunger and thirst. Her pediatric GI doctor is referring her there, but Medicaid of SC is unable to cover it. I understand that for Medicaid to cover Kennedy Krieger must sign a contract with them. I also understand Kennedy’s reason for not being able to do that for one child at this time. If Ana is treated there the cost will be between $54,000.00 and $100,000.00. If everyone in Beaufort County donated just 2 dollars, Ana could get the treatment she needs so desperately. Her physicians feel that the GERD is corrected. What they cannot understand is why she won’t eat or drink enough to maintain her life.
I am doing everything in my power to make everyone aware of Ana’s needs, so that maybe we can get some much needed community support. My husband and I would like to thank you for any and all help. Please, if nothing else, keep Ana Maria in your prayers.
Emmy Bennett & Shey Bennett