Sydney Carel was born Sept. 7, 2012, and was diagnosed with Tay-Sachs Disease in October 2013. She died Thursday.
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, according to her mother, Christy Carel. By the time she was 9 months old, she started having more problems. When she was 21 months old, she was incapable of sitting up on her own because of her rare and incurable condition.
Tay-Sachs is a fatal genetic disorder that mostly occurs in children and causes progressive destruction of the nervous system, according to research from the National Human Genome Research Institution. It is found in juveniles and some adults and causes victims 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.
Sydney's family created a charity to help pay for medical expenses and raise awareness about Tay-Sachs after Sydney's doctors had given her a life expectancy of four years. Her mother said she was thankful for the thousands of people who have supported her family through this difficult time.
The charity is called Sydney's Circle. The latest status update on the charity's Facebook page states: "It's with great sadness that we wanted to let everyone know that Sydney received her angel wings this morning and God took her home. She was peaceful and surrounded by the love of her family. We appreciate all of your prayers and support during this difficult journey."
The family received a lot of support from the Special Learning Center and the National Tay-Sachs and Allied Disease Association, said Gary Kempker, Sydney's grandfather. He added the two organizations have been a tremendous resource to the family since Sydney's diagnosis.
"This has been a horrific illness, but the community support and the thousands of people throughout this country that have been supportive through prayer and other assistance is nothing short of unbelievable," Kempker said. "I have lived and worked in Jefferson City my entire life and I know this to be a supportive community, but until you have a tragedy like this, you never really appreciate what a tremendous place it is to live."
Kempker added the family's immediate goal was to get through the next few days before they assess what the next move is for the charity. But he did say the disease will remain in the family's focus for the rest of their lives and "anything we could do to prevent a family from going through this tragedy would be in everyone's best interest."
Links: