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Posted - 04/24/2008 : 12:22:23 PM

This is for the child of a current Everett Police Officer.

Stringing together beads of hope.

Marblehead - The Community Leaders Program at the Village School unifies over 40 sixth-graders who have made a commitment to serve as role models for younger students, according to guidance councilors Mandy Devanney and Jeff Newsom.

While “model behavior” can be as simple as greeting a younger student as they enter the school building or sitting down with someone who might be eating lunch alone, it can also extend to pursuits like that of sixth-grader Elizabeth Janscy, 12.

Janscy approached the school with a formal, typed letter, requesting approval of a unique project that coincided with the premise of the Community Leaders program.

Janscy’s plan: To string bracelets with purple and white beads and sell them for $1 a piece during school lunches to raise money for a close friend affected by Sanfilippo syndrome, Jared Connor, the 3-year-old son of her dance teacher.

Purple is the color of Sanfilippo syndrome, and white represents the “the angels that have suffered from the disease,” said Jancsy.

Mucopolysaccharidoses (MPS III), more commonly known as Sanfilippo syndrome, is a life-threatening degenerative disease that affects children as young as 2.

According to information on the Connor family’s Web site, You must be logged in to see this link. “Children with Sanfilippo are missing an essential enzyme that breaks down a complex body sugar called heparin sulfate. These sugars slowly build up in the brain, stopping normal development and causing hyperactivity, sleep disorders, loss of speech, dementia and typically death before adulthood.”

The site continues, “Right now doctors can do little to treat Sanfilippo’s symptoms and nothing to stop the regression. There are various experimental treatments being tested worldwide to lessen the effects of this terrible disease.”

Responding to that reality, Janscy developed the school-wide fundraiser to help the Connor family. She recalls the day after the Connors’ shared their story.

“Mrs. Connor held a meeting after a dance class,” said Janscy, who is a member of Lil’ Funk, the official junior dance troupe of the Boston Celtics, which Connors manages. “She started crying. The more she found out about [Sanfilippo syndrome], the more she was scared.”

Jared was diagnosed with Sanfilippo syndrome in March 2007, and it didn’t take long for the Connor family to enlist those around them to help them better understand the disease. Many seeking a more comprehensive scientific understanding of the disease can visit the National MPS Society online at You must be logged in to see this link.

While Jared’s Web also site (You must be logged in to see this link.) serves as a resource for those seeking more information about Sanfilippo syndrome, it is also the hub of an important fundraising effort. The Connor family created the Web site after learning that traditional treatment had little to offer their son. While the Connors have yet to allocate any funds at this point in time, a portion will cover the expense of Jared’s nontraditional treatments, like acupuncture and herbal supplements, and the rest will help fund experimental research. Contributions can be sent to Jared’s Foundation, P.O. Box 490155, Everett, MA 02149.

Sanfilippo syndrome is rare. Only one in every 70,000 children will develop the disease. As a result, the demand to develop effective treatment is substantially lower than more prevalent diseases. This results in “little, if any, monetary support,” said Reia Connor.
“Therefore any hope for a cure is in our hands,” she said.

The Connors have accepted the responsibility and then some.

“When you get hit with something like this, you have a lot of questions,” said Rick Connor, an Everett police officer. “If it wasn’t through networking, we wouldn’t know as much as we do. We had to find something, we thought, at least to preserve the brain.”

Through the help of other families struggling with Sanfilippo syndrome, the Connors were given hope. They learned of soy extracts and dietary changes that are believed to help to slow and sometimes halt brain degeneration. They also learned of a doctor in Ohio working with enzyme-replacement therapy.

The family is not passing up any chances, said Rick Connor, who takes Jared to a natural healer in Chinatown, even though it is not a course of treatment many patients pursue.

While the Connor family has strengthened their hopes for Jared’s health, Janscy and the students at the Village School have added to the financial resources available for Jared’s treatment and ongoing research. On Friday in the Village School auditorium, Jancsy and fellow Community Leader members presented the Connor family with a check for $525.

“For you guys being as young as you are and to be willing to reach in your pocket and help somebody you don't even know, I don't have words to express how important that is to our family,” said Reia Connor, standing beside her husband.

Pausing for a moment to glance at her son, she then looked out at the students and said, “You did something very important. You should feel really good about yourselves.”

waterboy
Senior Member