Posted October 2, 2020

Maddy was born in Cleveland, Ohio and is 25 years old. She was about three months old when her family received the news of her 22q diagnosis. At seven weeks of age, Maddy had open-heart surgery at Cleveland Clinic to repair her Ventricular Septal Defect. Unfortunately, she had many complications from the surgery, briefly underwent dialysis and spent 10 days in the hospital. Maddy’s heart specialist recommended that she have genetic testing. At that time, Cleveland Clinic did not have a geneticist on staff, so the family went to Rainbow Babies and Children’s Hospital. This is when Maddy was diagnosed with 22q. Maddy also has Cerebral Palsy. Her family thinks this may be the result of the complications from her heart surgery.

School was challenging for Maddy. Her family did a lot of research on 22q and presented their findings to the school psychologist. As a result, Maddy was given an IEP and was able to get the extra help she needed. In addition to the developmental delays Maddy experienced, she also struggled with math, logic and reasoning. Based on the family’s research, they believed Maddy eventually would catch up with her peers, but they weren’t sure when that would happen.

While she was growing up, Maddy enjoyed playing softball. She played in a summer recreational league. Maddy also twirled competitive baton and went to many competitions including nationals. She enjoyed reading so much that she was a summer reading tutor with her community’s library system and even taught her younger sister how to read. Maddy also worked as a volunteer camp counselor at a local day camp.

After graduating from high school, Maddy applied to Ursuline College. She was advised to go to a community college first and then to apply to Ursuline later, so Maddy went to Lakeland Community College for two years and then to Ursuline. Because of her love of reading and writing, Maddy initially pursued a degree in English. However, she found her true calling in the social work program at Ursuline. Maddy currently is a senior and has an internship with a local agency. She has been very active in college. Maddy was a member of the Orientation Team at Ursuline and participated in the AIMS program that paired an upper classman with a freshman who needed extra support. She also worked in Ursuline’s Ringers Program where she was responsible for calling prospective students and telling them about the school’s programs. Maddy’s ultimate goals are to obtain her social work license and to help other children with developmental disabilities succeed in school.

As Maddy continues to pursue a degree in social work, she also aspires to be a writer. She already has many stories outlined. She wants to encourage individuals living with 22q that you don’t have to be afraid to ask for help when you need it. This is great advice for anyone!