News and Updates

One Family’s Journey

Meet Andrew, a South Carolina resident and Super HERO!

Andrew was born with a rare genetic condition called CHARGE syndrome. Getting the care Andrew needs has been challenging for his family. He was born with a severe heart defect and has a bilateral hearing impairment, vision impairment and many other medical conditions. His family has been dedicated to finding the best care and resources available to help Andrew shine. Now at the age of 15, Andrew has the opportunity to attend Perkins School for the Blind in Watertown, Massachusetts. This program will allow him to be around others who also have this same rare genetic condition - something that was not possible in his home town in South Carolina.

Andrew loves ClemsonAndrew's parents have learned to become the best advocates possible for their son. They first had to learn everything they could about his condition and how deaf-blindness impacts him on a daily basis. How do you function in life when you cannot depend on your eyes or your ears or your body to give you the information you need?

During the years, they have researched and sought the help of other organizations all over the country who might provide information on how they could best help Andrew thrive. The list includes a number of organizations, including the CHARGE Syndrome Foundation, Perkins School for the Blind, National Center on Deaf-Blindness (NCDB), National Family Association of Deaf-Blindness (NFADB), Beginnings SC (Hearing Loss Advocacy group), Family Connection of South Carolina, the South Carolina Department of Education, Protection and Advocacy for People with Disabilities, South Carolina Interagency Deaf-Blind Project, as well as countless other parents and friends.

"I soaked up every bit of knowledge that I could and found myself on a path of advocacy that I could never imagine possible," says Andrew's mom Minnie.

According to Minnie, she struggled with balancing being Andrew's mom and a supporter of public schools and the supports and resources provided under the Individuals with Disabilities Education Act (IDEA). Over time, she has learned that Andrew needs more. Andrew needs Total Communication, not just an Interpreter because he has limited knowledge of American Sign Language (ASL). He needs a Functional Based Curriculum with hands-on learning from a teacher who understands how to meet the complex needs of a child with multiple sensory impairments. He needs to be immersed in learning 100 percent of the time. He needs a teacher and service providers who know how to help him. He needs to be around his true peers, not just people his same age.

“Set the bar high because Andrew is capable, and he will do it. Just give him all of the information and let him do it,” said Andrew's teacher at the Perkins' summer program.

Andrew's mom says she has always tried to use the philosophy of  “do with, not for” when it came to caring for her son. Unfortunately, there haven't been many in their world who understood what that actually means. But now, with the right resources, supports and strategies, the tides seems to be shifting, according to Minnie.

"The most valuable lesson I have learned because of Andrew is to never stop trying to change the things that you think should be different," said Minnie. "Always seek those who have knowledge and hold them tight. I am his mom, his advocate, his biggest fan, and we are so excited to see him thriving in so many ways."

 

 

About CHARGE Syndrome
CHARGE is a rare genetic condition that affects one in every 8-10,000 children. Children with this condition have numerous medical issues and usually require an enormous amount of medical care from a team of doctors and specialists. They often spend much of their time in and out of the hospital.