1. Understanding how enzymes work and affect our body

2.  John and Alicia Bennett live in Amador County which is near Sacramento California  John is a trucker & volunteer fireman  Alicia is a receptionist  They have three children..  Ciara 7 years old  Hunter 4 years old  Tommy 3 years old

3.  Ciara’s infant development was normal except for speech. They thought maybe she was deaf.  In August 2000, a special education teacher recognized that Ciara displayed some of the symptoms of Sanfilippo syndrome: puffy cheeks, coarse hair, & big eyebrows.  Ciara was diagnosed with Sanfilippo syndrome in August 2001

4.  Two months after Ciara’s diagnosis, biopsies were taken from Hunter & Tommy  Both were later diagnosed with Sanfilippo syndrome

5.  A genetic disorder that is very rare.  It usually causes death by teen age years after severe brain and organ damage occurs.  The heart, bones, joints, respiratory and central nervous system are destroyed.  The patient lacks an enzyme that breaks down sugar molecules in the body

6.  All three children need 24 hour care  The Bennett’s lost their home and jobs seeking medical treatment for their son Tommy  Kaiser Permanente initially refused to pay for the experimental stem cell transplant  Eventually they will bury all three children

7.  They are “blank” cells  They can be “programmed” to become any type of cell in the human body  Are typically harvested from the placenta, the umbilical cord or human fetus  Can be transplanted into a person and used to treat a number of medical conditions

8.  Duke attempted three times to replace Tommy’s faulty blood with that of a healthy newborn  The stem cell transplant didn’t work and Tommy died Nov. 24, 2003  John & Alicia Bennett have returned home & are caring for Ciara and Hunter as well as mourning the loss of Tommy

9.  Visit Alicia Bennett’s daily Internet journal  www.caringbridge.org/ca/bennettboys/ www.caringbridge.org/ca/bennettboys/  Also visit a search engine like google and type in key words such as sanfilippo syndrome or tommy bennett