Posted by: Dr. Edna H. Hall on Fri, Aug 1, 2008
Against All Odds
Xeniana Dy’Sheila Edwards
“Xeniana Dy’Sheila Edwards” was born May 3, 2000 in Pitt Memorial Hospital to Shermika Michelle Speight and Ronnie Edwards. She stayed in the hospital longer than usual because she had jaundice and was very small. After extensive blood work she was diagnosed with sickle cell anemia. Her mother, Shermika also suffered severely from this same disease along with asthma and seizures. Her mother was advised to never have children because of the high risk of having a stroke or seizure during labor and delivery, but Shermika wanted Xeniana so badly she opted to take the risk. She had a very complicated pregnancy and delivery due to her sickness but to her it was worth it. She loved Xeniana whom she called “ZZ”. Even though she was unable physically to care for her, she gave it her all. Shermika and Xeniana lived with her grandmother (Hattie Hooker) until Shermika suffered a massive stroke on Feb. 11, 2003 while staying at the hospital with Xeniana who was constantly hospitalized with upper respiratory problems. ZZ was named by her grandmother, Geraldine Speight (Shermika‘s mother) Geraldine died April 1, 2000 of leukemia never getting to see Xeniana. Xeniana has one brother, Trevon Harris whom she sees maybe during the summer while at camp. Her grandfather, Nathaniel Speight (Shermika’s father) is totally blind therefore has never seen Xeniana either. Xeniana also suffers with asthma, allergies and ADHD. Every 4 weeks she receives chronic transfusion as a means of potentially keeping her from having a stroke, but it is not a guaranteed cure. They do a Trans Doppler Cranial Ultrasound on Xeniana every 6 months. In March 2003 Shermika was placed in a nursing home. The stroke left her blind, lame and unable to recognize family or friends except for “ZZ”, Grandma Hattie, and her Aunt Edna (her mother’s sister). Shermika died August 29, 2005 due to complications associated with her disease. After her mother had the last stroke, Xeniana eventually went to live with her Uncle Isaac and Aunt Edna. She started school but is developmentally delayed which caused her to repeat Kindergarten. Although she is still slightly behind she is doing much better and is very enthusiastic about learning. For more information on her disease log on to sickle cell disease.org. In April 2012 Xeniana was entered into the TWITCH Study wherein she would start a drug called hydroxyurea. This medicine hopefully would replace her having to be transfused. On Oct. 3, 2012 even though she was admitted into the hospital, beat all odds and got the good news on Oct. 4, 2012, that she will no longer have to have transfusions. She still has sickle cell disease,but NO MORE TRANSFUSIONS! Thank God for opened up the field field and allowing them to discover hydroxyurea. In 2015 Xeniana started having problems with her kidneys so they stopped he hydroxyurea. And after the tests were completed they started her on this new drug called jade up, which is the equivalence to Exjade . She has been doing wonderful since then. She has bouts. With chronic migraines but she is a fighter.
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