Sanfilippo Syndrome

It’s a well-known fact that too much sugar in your system can be very harmful, causing everything from tooth decay, to diabetes. But for a rare few their inability to deal with the body’s sugar can lead to a debilitating, and deadly condition, for which there is no treatment or cure. And Monday, we met one family, that is struggling on its own, to battle the effects of Sanfilippo Syndrome with not one child but two. Maria Hayes has the story.

Warren Dendekker was an active and happy baby though slower at reaching milestones than his 2 older siblings. At 11-months, Warren was diagnosed with a hearing impairment, reasoned as the a cause of his delay. His younger sister Katherine also moved at her own pace. An appointment with a McMaster neurologist for another matter led to a difficult discovery.

Sandra Dendekker, Mother: “When he saw her a year later he had a look at her and said I think there’s something going on here. And with everything you’re telling me about Warren, we could be looking at the same thing.”

Warren and Katherine were both diagnosed with the genetic disorder Sanfilippo Syndrome. Their bodies don’t produce an essential enzyme needed to break down complex body sugar. Over time that sugar gets stored in the bones, the brain and other organs stopping normal development.

Sandra: “It was really hard. It was hard that first summer we found out. And you just think of all the things and what will happen long term. You just let your imagination go wild with thinking we can’t handle this.”

But since the diagnosis almost 3-years ago, Sandra, husband Peter and older children Emma and Noah have embraced the changes in Warren and Katherine.

Sandra: “We’ve learned to enjoy them for who they are. And we love them dearly and they sure give us a lot of love too.”

The syndrome damages cognitive function and robs children of their speech. Katherine’s disappearing almost completely over the last 9-months. It also chips away at mobility. We can compare it to a childhood Alzheimer’s. If you think of an elderly person with Alzheimer’s and how their body overtime just ends up shutting down.

With no cure or treatment many children don’t live beyond their teens. But the Dendekker’s are joining other families hurt by this syndrome to fund their own research. The latest fundraiser is a benefit concert with classical pianist Valerie Tryon and organist Chris Teeuwsen. Billed as great music for a great cause, the event is scheduled for this Friday evening at MacNab Presbyterian Church in Hamilton. All money raised at the concert goes to the Sanfilippo Children’s Research Foundation. Here are some details:

Sanfilippo Concert
Friday October 25, 2013
MacNab Presbyterian Church
116 MacNab St. South
Hamilton
Tickets Sandra Dendekker 905-628-8398
or sandradendekker@hotmail.com <mailto:sandradendekker@hotmail.com>