About Giuliana

Giuliana Grace is a 14 month old precious baby who is extremely loved by her family. She has been a blessing to her family from the moment her mother found out she was pregnant. Giuliana is a happy little baby whose big smile lights up the hearts of her parents.

She was born on July 6, 2013. She developed typically until approximately 3 months (although there may have been minor signs of a problem earlier). At 2 months when on her tummy she pulled up on her arms, had good head control and rolled over. At 3 months I started to notice that she did these things slightly less often but still did them. At 3.5 months she developed a nystagmus (dancing eyes) which was the first red flag. We immediately took her to several ophthalmologists, pediatricians and neurologists who assured us that she was fine even though I expressed concerns about her motor skills at that time. She even had neurologic testing (encephalogram and ultrasound of the brain) at 3.5 months that was negative. Then at 4.5 months she developed a high fever from a urinary tract infection for which we brought her to the emergency room. When she was admitted to the hospital, the doctors finally saw what I had seen all along that her motor skills are rapidly deteriorating. We are now fighting to find out the cause of her regression and treatment as soon as possible.