Golf outing to benefit Sanfilippo syndrome foundation

Golf outing to benefit Sanfilippo syndrome foundation

CHAMPAIGN — Kelly and Jake Hubert learned nearly four years ago that their now-6-year-old daughter, Livia, has a rare, incurable genetic disorder called Sanfilippo syndrome.

Now, through a foundation they started in 2010, they are striving to raise money for research and awareness of this disorder, also known as MPS III.

A third annual golf outing to raise money for their foundation, the Liv Life Foundation, is set for June 28 at the University of Illinois Golf Course's Orange Course. All proceeds will go to the foundation, Kelly Hubert said.

The Huberts, who now live in Roscoe, are originally from Champaign County and moved to Roscoe for Jake Hubert's job.

Kelly Hubert, who grew up in Homer, says Livia was diagnosed in 2009 with Sanfilippo syndrome when her second daughter, Finley, was just 8 weeks old.

In children with this disorder, which occurs in one out of 70,000 births, enzymes needed to break down long chains of sugar molecules in the body are missing or defective.

Some children with severe forms die at an early age, but most live into their teens, according to the National Library of Medicine.

Livia's development progressed normally at first, but she wasn't walking by 18 months, and her speech was de- layed. She did eventually walk and speak, but has since regressed in several ways, such as losing her speech, suffering seizures and changing her eating patterns, her mother said.

Still, Livia is happy and social, Kelly Hubert said.

"There is something about her; she's got a light in her," she said. "People will often say, 'I feel like Livia is looking into my soul.' That's the way she communicates with us, by looking into our eyes and smiling."

Registration for the golf outing can be done online at http://www.livlife.us.

Golfers can also register on the day of the outing, starting at noon, Kelly Hubert said.

The cost is $100 per person, and lunch and a cart are provided.

There's also a chance to win a car with a hole in one, she said.

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sweet caroline wrote on June 11, 2013 at 8:06 pm

Sending an abundance of prayers for a miracle for Liv and her family.