Dream Vacation for Terminally Ill Toddler Jul 15, 2008
Caitlin suffers from a rare, genetic disease called Sanfilippo syndrome, for which there is no cure or treatment ... In Britain, where cases are registered, only one in 80,000 children is born with Sanfilippo syndrome, according to Britain's MPS Society, a support group. (ABC News)
Hoedown will offer a chance to horse around for a good cause Jun 6, 2008
Wellesley resident Jennifer Siedman s relationship with Lovelane began 9 years ago, when her son Ben, now 12, first started riding after being diagnosed with Sanfilippo Syndrome, a rare and fatal genetic disorder. It really was a surreal moment the first time I brought Ben to a lesson. (Wellesley Townsman, MA)
Letter to the editor: Fundraiser for Jared Connor May 9, 2008
Jared has been diagnosed with Sanfilippo Syndrome and his parents have been told by doctors that he would only live until 10 to 15 years of age. Children with Sanfilippo Syndrome are missing an essential enzyme that breaks down a complex sugar molecule in the body called heparin sulfate ... In children that do not have Sanfilippo Syndrome, their bodies, over the course of their lives, continually build up new complex sugar molecules known as mucopolysaccharides (long chains of sugar molecules... (Saugus Advertiser, MA)
How policy forced a family to desert their child Apr 11, 2008
Jessie had been diagnosed eight months earlier with a devastating genetic condition known as Sanfilippo syndrome, which causes progressive, irreversible brain damage. She could not hear properly or speak, her mental development was delayed, she was incontinent and was constantly on the move. (Sydney Morning Herald -- Australia)
Sly Syndrome: Delivering Medicine To Fight Rare Genetic Disorder Jul 27, 2007
The research was funded by the National Institutes of Health, The Sanfilippo Syndrome Medical Research Foundation and VA Merit Review. Note: This story has been adapted from a news release issued by Saint Louis University. (Science Daily)
Daily pill to beat genetic diseases Apr 26, 2007
I have three children with Sanfilippo Syndrome which is related to Hurler Syndrome. www. (Times Online)
