Saturday fundraiser in Connellsville to benefit toddler with severe epilepsy
In the hope of helping a local family with expenses as they deal with their 3-year-old daughter's diagnosis of Dravet Syndrome, a fundraiser will be held from 2 to 5 p.m. Saturday at Connellsville Senior Citizens Center on Fayette Street.
Sydney Michaels had her first seizure when she was just 3 months old. Her mother, Julie Michaels, 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,” she said. “Her face was blue due to lack of oxygen for most of it — it was absolutely terrifying.”
Over the next few days and months, seizures became 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 finally diagnosed with Dravet Syndrome at 11 months old. The diagnosis was made after a genetic test revealed Sydney had a rare mutation on one of her genes that caused 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.”
Earlier this year, the community came together to help the family raise funds for 4 Paws for Ability (in Ohio) so that Sydney can receive a seizure-detecting service dog.
The dog not only is able to tell in advance that a large seizure is coming, but also can retrieve emergency supplies. The dog will be trained to assist Sydney with her walking when balance is an issue,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.
One final step remains for Sydney to get her dog, though. The family must 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.
Friends of the family are holding a fundraiser — with an aim to raise $5,000 — to help with hotel costs and lost work pay. If the money can be raised in time, Sydney and her family will attend the training in April.
Kristy Detar, the fundraising event coordinator, said this is not the family's only money issue.
“They have many medical bills and travel expenses,” she said. “Sydney has doctors in Florida, Chicago and Pittsburgh in order for her to get the best care, and she is not clear to fly because of her condition, so they must drive.”
There will be representatives from many independent companies at the Saturdays fundraiser. Items for sale will include Avon, Cookie Lee Jewelry, Celebrating Home, 31, Initials-Inc., It Works!, Tastefully Simple and Pampered Chef. The event will include a bake sale and a chinese auction.
“We are so grateful to our friends and our local community for opening their arms to embrace us as we deal with all of our daughter's many health issues,” Michaels said. “We don't know how we would make it through this difficult time without all the local support. Your prayers and financial assistance do so much to ease our minds so that we can concentrate more fully on finding the best help possible for Sydney.”
Rachel Basinger is a freelance writer.