My name is Alicia Bennett and my three children (Ciara, Hunter and Tommy) were born with Sanfilippo Syndrome, or Mucopolysaccharidosis III (MPS-III), a rare autosomal recessive lysosomal storage disease. It is caused by a deficiency in one of the enzymes needed to break down the glycosaminoglycan heparan sulfate.
Ciara was diagnosed at the age of 4. At that time, Hunter was 2 years old and I was pregnant with Tommy. Hunter and Tommy were diagnosed a two years later. When the boys were diagnosed, we heard about the stem cell transplants they were doing at Duke University so we flew there to see if the kids qualified.
Ciara and Hunter did not qualify but Tommy was a great candidate for the transplant. His first two transplants did not work but the third one did. Unfortunately, his little body couldn’t fight off the Adenovirus and he passed away at the age of 4.
That was eight years ago and Ciara and Hunter went from walking, talking, eating to being in wheelchairs and unable to walk or talk. They also have feeding tubes. There is no cure for Sanfilippo Syndrome and kids usually live to the ages of 10-14. Ciara is now 15 years old and Hunter is 13 so time is running out for them.
Let’s find a cure today! For more info. on Sanfilippo Syndrome, visit Facebook.