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)
Lew, family fight their own war at home Nov 23, 2006
"The Montgomery family portrait reminds you of those you find in frames on sale at Sears.Lew and Stacey have three girls -- ranging in ages from 10 to 15 -- who greet you at the door with welcoming smiles. Quickly, they scurry back to the basement to resume play.On this autumn afternoon, nine-year-old Lucas Montgomery is feeling especially lively and mobile, wearing his gray Hawkeye hoody.He lingers upstairs, near mom.Like his sisters', Lucas' eyes light up as a stranger stands before him. No... (Waterloo-Cedar Falls Courier)
5K race shines light on incurable disease Oct 12, 2006
Erin suffers from an incurable genetic disease known as MPS III, or Sanfilippo syndrome. She participated in the race Sept. 30 in a wheelchair and finished in 42 minutes, said her mother, Stacy Peters. (Atlanta Journal-Constitution -- Metro)
Son's disability inspires sensory stimulation project Sep 20, 2006
Christopher Douglas Fornes, 25, died in January of Sanfilippo syndrome, a rare, genetic, progressive, metabolic disease. His mother said because Christopher giggled when the wind hit his face and was mesmerized by ceiling fans, she and her husband, Kevin, hung mobiles from the ceiling and sought other ways to provide mental stimulation. (Florida Times-Union)
Riegs of Woodbury Prayer Cranes Benefit Family Jun 28, 2006
Cooper was diagnosed last fall with MPSIII type A, or Sanfilippo syndrome, a rare disorder that causes loss of speech and understanding, loss of mobility and an array of other symptoms that affect virtually all systems of the body. Those diagnosed with Sanfilippo syndrome rarely live beyond their early 20s. (Voices, CT)
