(Posted November 3, 2020)
As a mom of a child with 22q, Cassie’s goals for her son, Lee, are similar to those of any mother. She wants him to finish school and to achieve any dreams he has, as he grows older. Lee was born in Moultrie, Georgia in November of 2013. After his birth, the doctors discovered that Lee had congenital heart defects, which led to genetic testing. He was diagnosed with 22q11.2 deletion syndrome when he was one week old.
In his almost seven years of life, Lee has had two open heart surgeries, a feeding tube, Lovenox shots at home, several heart catheters, VPI surgery, been in the operating room four times for dental issues and has been hospitalized many times due to things such as viruses, parainfluenza and seizures. Lee has many specialists that follow his care including a cardiologist, immunologist, neurologist, dentist and craniofacial/speech therapist.
Lee currently attends kindergarten via remote learning. He works on the computer with Cassie and his class, which includes other remote learners and a teacher. They have daily Zoom meetings. Lee began attending a public school preschool program when he was three years old. The school provides early intervention for children with special needs. Due to his attention and memory issues, Lee struggles in school. He also misses a lot of days and months due to illness and surgeries. Because of Lee’s weak immune system, even a common cold can put him in the hospital.
Lee enjoys being outdoors and riding his four-wheeler. He also rides on a motorcycle with his dad. Before his second open heart surgery, Lee participated in tae kwon do.
Cassie says Lee’s biggest accomplishment is surviving two open-heart surgeries. He and his family also are proud of him writing his name unassisted and learning to ride his four-wheeler by himself.
As Lee grows older, Cassie is trying to teach him that there are many struggles in life, but you have to keep trying and never give up. She is very impressed by her son and his accomplishments. “He amazes me every day with what he can do and he doesn’t let anything stop him,” Cassie says with immense pride.