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.
Show commenting policy
TribLive commenting policy
You are solely responsible for your comments and by using TribLive.com you agree to our Terms of Service.
We moderate comments. Our goal is to provide substantive commentary for a general readership. By screening submissions, we provide a space where readers can share intelligent and informed commentary that enhances the quality of our news and information.
While most comments will be posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can. Because of the volume of reader comments, we cannot review individual moderation decisions with readers.
We value thoughtful comments representing a range of views that make their point quickly and politely. We make an effort to protect discussions from repeated comments either by the same reader or different readers.
We follow the same standards for taste as the daily newspaper. A few things we won't tolerate: personal attacks, obscenity, vulgarity, profanity (including expletives and letters followed by dashes), commercial promotion, impersonations, incoherence, proselytizing and SHOUTING. Don't include URLs to Web sites.
We do not edit comments. They are either approved or deleted. We reserve the right to edit a comment that is quoted or excerpted in an article. In this case, we may fix spelling and punctuation.
We welcome strong opinions and criticism of our work, but we don't want comments to become bogged down with discussions of our policies and we will moderate accordingly.
We appreciate it when readers and people quoted in articles or blog posts point out errors of fact or emphasis and will investigate all assertions. But these suggestions should be sent via e-mail. To avoid distracting other readers, we won't publish comments that suggest a correction. Instead, corrections will be made in a blog post or in an article.
- Fayette woman wins $13M discrimination lawsuit
- Mercer County group seeks input on trails from Connellsville
- Democratic sheriff candidates in Fayette split on responsibility of office
- Connellsville middle schoolers ‘Adopt a Grandparent’
- Fayette County Crime Victims Center marking milestone
- Sex trafficking survivor to speak at Penn State Fayette
- 12th annual Connellsville Community Yard Sale around corner
- Park, library upgrades on agenda for Connellsville Redevelopment Authority
- Frazier School District’s credit rating downgraded