Bailey L. - Quilt Finished in 2007

Born: March 25,1998

Illness: Sanfilippo Syndrome (MPS III A)

Bailey's Story

Written by Bailey's mom Anne in 2007

Bailey was born 2 weeks early and had premature lungs.  She spent 9 days in NICU at Munson Hospital in Traverse City, Mi.  She weighted 8lbs 3oz and was 21 1/2 " long.  While in NICU, she also had jaundice.  Bailey was growing a little slower than other children.  Her milestones were not as a "normal" child. Every doctor we saw told me "there is nothing wrong with your daughter". First time mom syndrome, as I heard it. She had constant diaper rashes and hearing loss. 

When she was 18 months old, she was removed from my care and put into foster care for medical neglect. For 9 months she was out of my care.  During her stay in a foster home, a doctor noticed her stomach was not normal looking.  So after checking into this, we discovered that she had a mucopolysaccharidois disorder, Sanfilippo Syndrome Type A ( MPS III A).  This is a rare genetic disorder that there is no cure or treatment for.  After 9 months of foster care and the drs findings, the state let me take my daughter home since there was nothing that they could do for her. It was also found that the state had no real reason to take her from my care since it was due to a genetic issue.

To date, she has had 5 ear tubes surgeries, adenoids and tonsils out, dental work and travels 5 hours to go to U of M in Ann Arbor for treatments/appointments with specialists.  Bailey can no longer talk now and she cannot walk on her own anymore.  Mentally Bailey is only 9-11 months old even thought she is 9 years old now.  She is a very happy child that loves music and her family!  She loves to watch Blues Clues, bear in the big blue house, elmo, and barney.  She loves to dance to the music (with help now from mom or dad).  She enjoys going shopping trips and fishing.  Oh and she loves going to school!  She is in a special ed class SXI and just loves her teachers, Deb, Melissa, and Diane.