Danielle's Rett Syndrome Journey

Danielle "Deedee" was diagnosed with Autism at 24 months (Sept. 2000). She had no speech, had no eye contact, ground her teeth and had stereotypic hand movements. In November of 2005, Danielle was admitted to the hospital with sudden neurological losses. At that time she was diagnosed with Rett Syndrome. She had been struggling for 4 years with failure to thrive. It became a severe problem by April 5, 2007 when she had a G-Tube placed. From that date on she had repeated g-tube infections and sepsis 5 times. During this time we started seeing cardiac issues, temperature regulation problem, and episodes of extremely low blood pressure. August 15, 2007 she had a pacemaker placed. This controlled the Bradycardia (heart rate below 30 bpm). The blood pressure continued to be a problem. Then she started have severe apnea episodes (waking and sleeping). It was at this time they realized that her autonomic system was failing. This progressed to not being able to hold any food or g-tube feedings down. Then in January of 2008 her digestive system shut down completely. It was at this time that her heart was only beating when it was paced by the pacemaker and the apnea became a constant and her oxygen saturation began to fall even with help of oxygen. On January 29th, 2008 at 7:45 PM (EST) Danielle lost her battle, and went home to the Lord.