This is Lydia who is a happy , fun, out going 5 year old girl!! She needs a Kidney transplant. She loves to dance and sing. Her two favorite singers are Katy Perry and Taylor Swift. She have been sick since August of 2014 with an auto immune disorder. I am weak, tired, had blood seeping from my bowels and extreme weight loss. Though her parents took her to the doctor repeatedly, insisting that something was wrong, She went undiagnosed until January 2015 and began treatment for Ulcerative Colitis. After several doctor appointments and medication, the UC went into remission but continued blood screenings to monitor my chemistry panel.
It was discovered in August of 2015 that something was not right with her kidney function. Labor Day weekend She was admitted to Riley Children's Hospital and they did a biopsy performed. She spent the entire day in bed where She was required to lay flat on her back to prevent internal bleeding from the procedure. The next three days in the hospital She was given super strength IV steroids. Because She initially showed improvement from the steroids, She was sent home on Labor Day afternoon. However, since that day no improvements have been visible in my lab work, although She still been taking large doses of steroids daily.
Now she is only showing signs of the side effects (such as puffy face, very emotional and not sleeping through the night) with no improvement in kidney levels.
Therefore, medications are now being decreased slowly and a projected time line for the Kidney Transplant is in the works. She waiting on genetic testing to be done to determine if I have Nephronophthisis or not. If the genetic testing comes back positive for this, then there is likely no chance of the Kidney disease returning in the "new" kidney. Otherwise it can happen her me all over again.
Her Parents Paula and David are working hard and trying to provide her with the best care they can but sometimes they need help. My medical needs are exceedingly expensive.
With everything going on, Lydia is always smiling and is happy. If there's any way anybody can help out this little girl it would be greatly appreciated. God bless you all.
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