Tallina S. (Talli)

Talli is a thrilled-seeking social butterfly.  She will turn 8 years old in October and she is just finishing up the 1st grade.  She is mainstreamed in our local elementary school with resource support, speech and OT.  She participates in jazz and ballet and Daisy Scouts.  She LOVES to build with Legos, take things apart, play with her friends, and visit Disney World.  Her favorite rides are the Tower of Terror, Splash Mountain, Space Mountain and Journey to Atlantis at Sea World. 

She was diagnosed with Propionic Acidemia from newborn screening, although she was well into her first crisis situation when we received the results of her testing.  She spent nearly a month at CHoP to stabilize her and get her diet just right.  She has had over 20 hospitalizations because of illness.  For the past 3 years, she has had received IV immuglobulins every four weeks.  She is unable to have the infusion run quickly, so she always has an overnight stay in the hospital.  We attempted to have her use a port-a-cath, but after a year of no problems she had two episodes of sepsis, the last one being fungal and bacterial.  She has other health challenges that have made it difficult to keep her stable all of the time and also just adds to her complexity.  She has Long QT Syndrome, hypothyroidism, allergies, asthma, esophagitis, GERD, secondary immunodeficiency, and occasionally, she has neutropenia, low platelets, and anemia.  She has a history of sleep apnea, is on her 4th set of ear tubes, has had her tonsils removed once and her adenoids twice.