Sydney's Shake-a-thon being held Saturday at Connellsville Junior High
Sydney Michaels, daughter of Paul and Julie Michaels of Connellsville, had her first seizure when she was just 3 months old. Her mother said she never will forget that day.
“It was 8 p.m. on New Year's Eve, and the seizure lasted for over 20 minutes,” Julie Michaels recalled. “Her face was blue due to lack of oxygen for most of it. It was absolutely terrifying.”
Over the next few days and months, the girl's seizures were more frequent and more numerous.
“Water, light, sound, movement, illness — everything seemed to trigger a seizure with her,” Michaels said. “It became very difficult to leave the house with her. We finally reached a point where she was having thousands of small seizures daily with three to five big convulsive seizures each week — many of which required EMS and emergency medications to finally stop.”
Sydney was diagnosed with Dravet syndrome at 11 months. The diagnosis was made after a genetic test revealed the child has a rare mutation on one of her genes that causes the condition.
“Dravet syndrome can be best described as catastrophic epilepsy with associated developmental delays and behavioral disorders,” Michaels said. “A life-threatening type of seizure known as status epilepticus can occur frequently, and many Dravet children die young of SUDEP (sudden unexplained death in epilepsy).
“Medications typically fail to control seizures, and there is no cure,” Michaels said. “It is a truly devastating diagnosis.”
Little has changed with Sydney's condition, her mother reports, other than more frequent seizures (about 200 a day) and the implantation of a feeding tube.
In order to help the Michaels' family, a public fundraiser, Sydney's Shake-a-thon, is planned for Saturday at Connellsville Junior High School. From 10 a.m. to 3 p.m., students will dance the day away to raise money for the toddler.
Sydney's Shake-a-thon will include a disc jockey, live performances, food, a basket raffle, kids' activities, a Dravet syndrome information booth and more.
A second fundraiser will be a cornhole tournament scheduled for 1 to 5 p.m. April 20 in the former Morrell Fire Hall.
Pre-registration for the tournament is not necessary. The event will include a DJ, a basket raffle and food. Registration for the tournament will be $40 for a two-player team.
Michaels is a teacher in the Connellsville Area School District.
Last year the community came together to help the family raise funds for 4 Paws for Ability (in Ohio) so Sydney can receive a seizure-detecting service dog.
The dog not only can tell in advance that a large seizure is coming, but can retrieve emergency supplies. The canine will be trained to assist Sydney with her walking when balance is iffy and can intervene if behavior becomes an issue.
Michaels said the family was asked to raise $13,000 (half the cost of the dog), but the community helped raise a little over $25,000 in less than four months.
“All the money was sent to 4 Paws since fundraising was held under their name, so Sydney not only got her dog but helped other kids to finish up their fundraising, too,” she said.
In November, another fundraiser helped cover the $5,000 cost for the family to attend a 10-day session in Ohio at the 4 Paws training facility in order for Sydney's dog to be able to come home with her, as well as other medical bills and travel expenses related to the youngster's care.
Michaels said this week that with all of the medical expenses they've incurred over the last several months, the family has only about $500 left from the November fundraiser to put toward their training.
The training with Sydney's dog is set for May 6-17 in Ohio.
Rachel Basinger is a freelance writer.