Jacob Redmond
Well-Known Member
Sydney Michaels, 5, suffers from Dravet Syndrome, a rare disease that causes her to have thousands of seizures weekly.
Sydney will never grow out of the illness. There is no cure.
Sydney is the daughter of Paul and Julie Michaels of Connellsville.
In order to help the family with funds needed to meet Sydney's medical needs, a there will be some dancing taking place at Connellsville Junior High School from noon-5 p.m. May 30.
That's when the third annual "Sydney's Shake-a-thon" will be held.
Julie Michaels, is a teacher in the Connellsville Area School District.
"She will never outgrow Dravet. There is no cure, and the mortality rate is high," Julie Michaels said. "Dravet Syndrome is one of the most catastrophic forms of epilepsy that exists."
Sydney has good and bad days. She is participating in an FDA-approved experimental trial for a high Cannabidiol (CBD) oil. Julie Michaels said Sydney has shown quite a bit of improvement while on the oil.
"The trial will end somewhere between August and October of this year," Julie Michaels said. "We have been told that Sydney will be permitted to remain on the CBD oil but that we will have to pay for her oil at the end of the trial."
While the family has not been given exact costs of the drug, it is estimated that it would likely be somewhere between $200 and $400 per month.
This year's fundraiser will help the family with the drug costs so that Sydney will be able to continue with the treatment.
The event is open for the public. There will be food, T-shirts and basket raffles.
However, a dance-a-thon and other events are reserved for students who have fundraised for the Shake-a-thon.
"We are expanding a little this year in a couple of ways," said Julie Michaels. "The event has always been open to grades seven through 12, but this year we are including grade six as well."
The event will have more to do than just a dance-a-thon this year.
"Students will be rotating through different activities that include the dance portion, cornhole, and inflatables, including an obstacle course and 'the wrecking ball,' " Julie Michaels said.
There will be giant bowling as well.
Students were asked to fundraise $40 minimum by this week in order to attend and participate.
This guaranteed their ticket in, T-shirt, and some free food.
"The students and faculty of Connellsville Area School District have been very supportive of all of our fundraising efforts over the last few years," Julie Michaels said. "It is so touching to see the students working hard on gathering up donations and the staff making donations of baskets, food or money to help make this event a success."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Shake-a-thon to help 5-year-old from Connellsville | TribLIVE
Author: Rachel Basinger
Contact: Contact Us - Tribune-Review
Photo Credit: Sydney Michaels Family
Website: Pittsburgh News, Sports, and Events - Tribune-Review
Sydney will never grow out of the illness. There is no cure.
Sydney is the daughter of Paul and Julie Michaels of Connellsville.
In order to help the family with funds needed to meet Sydney's medical needs, a there will be some dancing taking place at Connellsville Junior High School from noon-5 p.m. May 30.
That's when the third annual "Sydney's Shake-a-thon" will be held.
Julie Michaels, is a teacher in the Connellsville Area School District.
"She will never outgrow Dravet. There is no cure, and the mortality rate is high," Julie Michaels said. "Dravet Syndrome is one of the most catastrophic forms of epilepsy that exists."
Sydney has good and bad days. She is participating in an FDA-approved experimental trial for a high Cannabidiol (CBD) oil. Julie Michaels said Sydney has shown quite a bit of improvement while on the oil.
"The trial will end somewhere between August and October of this year," Julie Michaels said. "We have been told that Sydney will be permitted to remain on the CBD oil but that we will have to pay for her oil at the end of the trial."
While the family has not been given exact costs of the drug, it is estimated that it would likely be somewhere between $200 and $400 per month.
This year's fundraiser will help the family with the drug costs so that Sydney will be able to continue with the treatment.
The event is open for the public. There will be food, T-shirts and basket raffles.
However, a dance-a-thon and other events are reserved for students who have fundraised for the Shake-a-thon.
"We are expanding a little this year in a couple of ways," said Julie Michaels. "The event has always been open to grades seven through 12, but this year we are including grade six as well."
The event will have more to do than just a dance-a-thon this year.
"Students will be rotating through different activities that include the dance portion, cornhole, and inflatables, including an obstacle course and 'the wrecking ball,' " Julie Michaels said.
There will be giant bowling as well.
Students were asked to fundraise $40 minimum by this week in order to attend and participate.
This guaranteed their ticket in, T-shirt, and some free food.
"The students and faculty of Connellsville Area School District have been very supportive of all of our fundraising efforts over the last few years," Julie Michaels said. "It is so touching to see the students working hard on gathering up donations and the staff making donations of baskets, food or money to help make this event a success."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Shake-a-thon to help 5-year-old from Connellsville | TribLIVE
Author: Rachel Basinger
Contact: Contact Us - Tribune-Review
Photo Credit: Sydney Michaels Family
Website: Pittsburgh News, Sports, and Events - Tribune-Review
