Eagles rock for afflicted family
Thursday, June 5, 2014
The Jefferson City community is rallying to support a little girl who may not see her fifth birthday.
The girl’s name is Sydney Carel and her family created the charity Sydney’s Circle to help her parents with medical expenses and other costs from Sydney’s rare, fatal and incurable disease. The charity also raises awareness for her illness, Tay-Sachs Disease.
Many people, businesses and civic organizations have donated time and money to Sydney’s Circle. Recently the Fraternity of the Eagles hosted a silent auction and dinner for more than 1,700 people to help the charity. Now, they are hosting the first EagleStock concert to help raise more funds for the family.
The Eagles have scheduled EagleStock for noon Sunday at Eagles Field, behind the Eagles Lodge.
The event is equal parts contest and concert with a battle of the bands for newcomers to the Missouri music scene, followed by a performance of some of the area’s veteran musicians. A portion of the event’s proceeds will go to the charity Sydney’s Circle, said Phil Jones, musician and organizer for the event.
“It will have everything from contemporary to classic rock and country. It will be what the people of Jefferson City like and listen to,” Jones said about the event. “There will be five local bands that are very well known … who are donating their time and fan base to bring people in to buy food, beer, water, soda and to just enjoy a Sunday in Jeff City. People will be sitting on a baseball field with their legs crossed enjoying some good music for a good cause.”
A trophy will be awarded to the winner of the battle of the bands by Mike Michelson, a longtime pianist at local venues.
Sydney was diagnosed with Tay-Sachs Disease in October 2013, said Gary Kempker, her grandfather and scheduled performer at EagleStock. The disease is a fatal genetic disorder that mostly occurs in children and causes progressive destruction of the nervous system, according to research form the National Human Genome Research Institution.
“I get to see them quite regularly,” Kempker said about his grandchildren. “I just looked at some videos yesterday from last Thanksgiving and she could still laugh and play. But unfortunately she has continued to decline, and there is less and less activity all the time. You might not see it as much on a day-to-day basis, but there is a significant change over months.”
Since her diagnosis the family has had to find a “new normal” with the different medical machines that now decorate their home, said Christy Carel, Sydney’s mother. She described her child as a newborn in a 21-month-year-old’s body because caring for Sydney is much like caring for a newborn.
“We literally just take it one day at a time,” Chirsty said about her daughter. “We treat her like we did before, but just with more care and caution. We still enjoy her and what she can still do.”
Sydney developed normally until she was 6 months old, she could sit up straight on her own and do anything a normal 6-month-old could do, Christy said. By the time she was 9 months old she started having more problems and now at 21 months she is incapable of sitting up on her own. Her doctors have given her a life expectancy of four years.
“She doesn’t talk and she can kind of move her arms and legs,” Christy said. “She is still breathing on her own and she knows she is loved. That is all we can do at this point. We never used to think we would talk about the amount of seizures our daughter has everyday, but that is our new normal.”
The disease is also found in juveniles and some adults and causes the victim to slowly lose muscle control as well as the ability to see and hear. The disease is 100 percent fatal for infants and juveniles, but some adults who are diagnosed survive with limited physical abilities.
The disease is hereditary and requires both parents to be carriers to pass it on to their offspring, said Sue Kahn, executive director of the National Tay-Sahcs and Allied Diseases. Only one in every four children born of two carriers is affected by the disease. On average 16 children are diagnosed with the Tay-Sachs in the U.S. every year, according to KidsHealth.org. Kahn said the number is closer to 50.
“The Tay-Sachs Gene Therapy Consortium has been working very hard on a treatment,” Kahn said. “They are on the preclinical trial work and their next step is human clinical trials.”
The results from treating mice in the preclinical trials using gene therapy systems called adeno-associated viral vectors have shown positive results for treatment of Tay-Sachs and there is hope to move to human testing within three years, according to articles published by the consortium.
Sydney’s Circle has hosted dinners, silent auctions and more with the help of local organizations to abate the damage inflected on the Carel family from the disease. The family’s goal is to raise enough money to cover living and treatment expenses so they can spend as much time with Sydney as possible while she is still living, Kempker said.
“The way people have come out and supported us and took place in the events has just amazed me,” Kempker said. “It is Sydney’s story that has drawn them out and not prior contact with the family. The level of support they have given us really makes me appreciate living in Jefferson City more than I already did.”
Businesses that have donated to the charity include N.H. Scheppers Distributing Co., Fechtel Beverage and Sales, Coca-Cola and Menu Maker Foods, Jones said. To learn more about the charity visit Sydney’s Circle Facebook page at facebook.com/sydneyscircle.
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