Home > For Families > Get Support > Rare Disease Day > Reese’s Story

Reese’s Story

Girl with long blonde hair and glasses in a pretty yellow dress with sandals poses outside. girl with long blonde hair sticks out blue tongue girl with long blonde hair dances Girl in a yellow shirt with long blonde hair poses outside.

Reese is 17 years old. At birth she was diagnosed with CHARGE syndrome after discovering heart defects, coanal atresia, and hearing loss. Reese underwent coanal atresia repair and open heart surgery before she was 2 weeks old, and another open heart surgery when she was 1 with several heart procedures to follow in the few years following. She was on various feeding tubes until she was 3. She also began walking when she was 3. It seemed as though her life was just getting started at that point.

Since, she has had BAHA implants, and a several relatively minor procedures over the years. We know she will require a new vavle in the near future, but technology has come so far since her last heart surgery. We certainly hope for a less invasive process this time around.

Reese is truly an amazing young lady. While on an IEP in school, she has been an A/B student her entire career and most of the time a straight A student. She makes friends easily and has absolutely the most positive attitude and personality I have ever known in a person. Every year she participated in her school’s conference version of a Special Needs Olympics. She loves Art and participates in her school’s Art Club. For the first time this year, Reese went to Homecoming with her best friend, they had an absolute blast!!! Reese is set to graduate high school next year, and will continue her education in our local work study programs to continue to develop her skills for a future job!

What would you like to tell other people about CHARGE syndrome?

Never underestimate a CHARGE kid. There will always be hurdles, therefore there will always be goals and achievements. We have proof! -Brian and Jody, Reese’s parents