Sara is a 7 year old girl and she is our second child. Our first child (son) passed away in 2003 at the age of 18 months due to an unknown disease. Sara was born as a healthy baby but it did not last long. When she was 14 months old she developed some rashes which grew all over her body. This was the start of her unknown and very complicated disease. She has undergone numerous tests and treatment by many local doctors. However, none of them succeeded.
Back then in May of 2006, my husband and I were told that our daughter had less than two months to live, and her medical team diagnosed her with a very rare immune system disease. With that determination her local medical team gave up on her treatment. Indeed it is nightmare for any parent to hear that news.We didn’t stop searching for options and finally Sara was admitted to a hospital in England for further treatment. She was first admitted in Leicester and then at Birmingham Children's Hospital, to whom we are so grateful. The hospital team started their treatment on Sara beginning on May 2006 and continued until February 2007.
Her complicated unknown disease from simple skin rash moved to her digestive system and turned into a blood disorder. Her medical team ran numerous tests trying to find a diagnosis for Sara, but to their dismay no clue was discovered. They suspected that Sara may have a very rare form of ALPS, but none of her tests have confirmed this possibility. We went back home with supplies of medications after about 9 months of treatment in UK.
Back home Sara’s treatment continued under the supervision of a professional pediatric team as per the instructions of her UK doctors. She has used immune suppressive medication such as Cyclosporin and & Prednisolone since we arrived back home.
Her medical condition continued the same until approximately one year ago, when we noticed some abnormalities in her mobility skills such as talking and walking.
With this new diagnosis many different tests have been performed on her but we were not given any hope for any sort of treatment. Her medical doctors gave up on her treatment and suggested that since her condition is very rare she will not live a long life. Again we were told to take her home and wait for her last moment to come. As her condition is becoming worse every day she continues to lose more of her balance. As a mother it is so heartbreaking to see Sara slowly disintegrating before my eyes. Sara is so full of hope, she wants to play just like any other child. She is a fighter, and wants to live. Her ultimate wish at this point is to become a pediatrician when she is older as well as a bride.
As a mother I am pleading to you for any sort of assistance. If you know anything about this disease or if you know someone that can help Sara with this rare condition we would be forever indebted to your assistance. There should be someone in this big world who is capable of helping Sara. Sara's condition has not only caused her great agony, but it is painful for my husband and I to even ponder the possiblity of never seeing Sara smile again. Please help us save Sara.
All her lab tests and comments from her pediatric team are available.
