Effort to help boy with deadly disease

May 15, 2009 The fundraising effort now under way will not only help 4-year-old Jasper Duinstra but could end up saving the lives of other children with this deadly disease.

Jasper Duinstra was like many 4-years-olds until a few months ago. He stopped walking, he stopping speaking, he lost vision. In March he was diagnosed with a rare neurological disease commonly known as Batten disease. Children with Batten continue to lose skills and function, and they die between 8 and 12 years old.

"It's nerve-wracking. It goes up and down. He sneezes and you go, 'Oh, there we go again.' You never know when he will lose another skill," said Sieglinde Duinstra, Jasper's mother.

Jasper's parents found an experimental trial that could stop the degeneration of Batten by supplying the gene that's missing in Batten kids. The trial experiment would cost $2.5 million to treat five children. That's something Jasper's family can't afford, and they can't afford to wait.

"This disease is very progressive. We don't have time to wait," said Sieglinde.

The family is getting some help. Jasper's former classmates are decorating donation cans for the trial experiment.

"This came up and there was no question, it was, 'What can we do and how fast can we do it?' And the children just rise to the occasion," said Katie Konieczny, Mayer school principal.

Friday morning, more than 100 students at Oscar Mayer Magnet School pitched in, doing their part to help a friend.

"We made cans. We decorated them so that people would think, 'Oh, it's so pretty, how can we help?' And so we're gonna collect money, and we're gonna give it to Jasper," said Tova Kaplan, Mayer student.

Jasper's brother is 6 and attends Mayer. When parents heard about the family's dilemma they went into action looking for ways to get Jasper and other children with Batten's closer to a cure.

"I heard them talking about how to help Jasper and what this day is about. They put it so beautifully how they explained it to the teacher, what we are doing today, it's just emotional great and uplifting," said Sieglinde.

Currently there is no cure. The trial hopes to halt the disease The trial is being done at Cornell Medical Center. Phase one proved no adverse reaction, so the center wants to proceed with phase two, but needs funding. The medical center has applied for federal funding but that takes time.


Article about Cornell clinical trial: http://news.med.cornell.edu/wcmc/wcmc_2008/05_13_08.shtml

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