Sep 28, 2011 By Joyce Koballa 3 min read

CONNELLSVILLE — A Connellsville couple’s goal to raise $30,000 for a research grant in honor of their daughter, who suffers from a severe form of epilepsy, will start with a cornhole tournament Saturday at 1 p.m. at Yough River Park.

Paul and Julie Michaels organized the fundraiser as the first of many they plan to hold for their 2-year-old daughter, Sydney, who was diagnosed last year with Dravet syndrome.

“It’s hard watching your own child slide further and further downhill,” said Julie Michaels.

Connellsville City Council received a letter in July from Michaels requesting the use of the park. Council approved the request this month.

“I was touched,” said Councilman Tom Karpiak.

Karpiak said he would help set up the boards and bags donated by the city for the tournament.

Paul Michaels is also building a cornhole game that will be raffled off while the family is selling food and having a bake sale.

Karpiak said he knows firsthand of the expenses a family can incur when their child is sick being that his daughter had a rare blood disorder when she was younger.

Dravet syndrome is a rare and catastrophic form of epilepsy for which there is no cure.

Seizures begin in the first year of life in an otherwise typically developing infant, with Sydney experiencing her first seizure at 2 months old, according to Julie Michaels.

Michaels said Sydney was diagnosed with Dravet at 8 months old and was experiencing up to 2,000 seizures a day, consisting of six different types.

“Because of the rarity and newness of the condition, we have to take Sydney to Miami every few months to meet with a neurologist that specializes in the condition,” said Michaels.

As part of Dravet, Michaels said Sydney remains at risk for sudden unexplained death in epilepsy (SUDEP) that strikes one in five children.

Additionally, individuals with Dravet have associated conditions such as behavioral disorders, autistic tendencies, movement and growth issues, sleeping difficulty and nervous system disruptions.

“The seizures are probably the worst symptoms because they are not controlled well with medications,” said Michaels.

Michaels said all proceeds raised from the cornhole tournament will go to Dravet.org, the largest nonprofit organization that raises research funds for the disorder.

Paul and Julie Michaels have also set up the “Sydney Michaels Foundation” fund thorough PNC Bank to help cover Sydney’s medical expenses.

Paul and Julie Michaels have a video of Sydney on Youtube under hope4sydney and are working on a website www.sydneyagainstdravet.org.