EVENT DATE: Jul 13, 2014
Did you know that 40-60% of all children born with Down syndrome are born with one of several types of heart defects? Their most common heart defect is called Atrioventricular Septal Defect or AV septal defect for short. An AV septal defect is a developmental problem in the embryo when tissues in the heart fail to come together. Our kids are then born with a large hole in the middle of their heart. Their heart can’t pump blood properly, causing increased pressure and stress on their little lungs. This makes breathing difficult and can lead to death. Luckily, doctors can surgically repair these heart defects. However the surgery needs to be done before the age of 5 or 6 months in order to prevent lung damage and death. Unfortunately, the Buffalo-Niagara region no longer offers our children the facilities that can accommodate the life saving procedures. Families are forced to travel miles from home or out of NY state to Boston/Philadelphia; causing additional emotional and financial difficulty.
The Family and Friends Down Syndrome Association of Niagara seeks to help our kids and their families by raising funds to offset the financial burden from travel expenses and by fostering an atmosphere of love and support at the surgical facility for the patient so one or both parents can be with their child. As a child with down syndrome who required multiple surgeries, Andrea and her family were able to weather the emotional and financial demands placed on them. As a result of this experience, they are cognizant of the need that exists to keep families together during these difficult times. 26 years later, Andrea continues to be the source of motivation and passion for her mother who strives to help as many families as possible overcome similar situations and realize a life full of possibilities and fulfilled dreams for their child. This year we announce our first Turn It Up for Down Syndrome, Concert in the Park! This is a celebration of our children’s lives and it will further help strengthen family to family support for those who are dully diagnosed with DS requiring emergency life-saving medical treatment or surgery out of state.
It is our belief that families that stay together, heal together.
** Donating to this fundraiser is separate from the purchase of any ‘Turn It Up’ tickets.