Understanding how enzymes work and affect our body

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

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

Two months after Ciara’s diagnosis, biopsies were taken from Hunter & Tommy

Both were later diagnosed with Sanfilippo syndrome

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

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

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

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

Visit Alicia Bennett’s daily Internet journal www.caringbridge.org/ca/bennettboys/ Also visit a search engine like google and

type in key words such as sanfilippo syndrome or tommy bennett