Our champion and advocate:
Donna McDonald-McGinn, MS, CGC

Heart of Genetic Counseling Award finalist
Written by Carol Cavana

Donna McDonald-McGinn (left) and Carol Cavana. Photograph by Matt Stanley.

 

Donna McDonald-McGinn has worked with my son Louis and our family at Children's Hospital of Philadelphia for 21 years. When my son was 3 months old, I got the devastating news that he had a rare genetic condition that I had never heard of and that could manifest as any number of health problems of widely varying severity over the course of his life. In short, we couldn't even know what our son's future would hold. Need­less to say, I was beside myself I was worried, scared, and over­whelmed. Our world was turned upside down. I cried for weeks about the unknown that awaited us.

From my first meeting with Donna, she has made me feel less alone and less afraid about what laid ahead. She started by providing a clear overview of 22q 11.2 deletion syndrome. Al­though I wanted to get a forecast of every problem we might expect my son to have, she taught me to deal with each issue as it came up, which has given me a great deal of peace about my son's condition.

When you learn your child has a condition you've never heard of, you don't even know what the next step will be. But Donna has held our hand and walked with us on each of these steps. 

"She is so much more than a genetic counselor who explains your diagnosis in a single, hour-long session. Donna has been our care coordinator and navigator for 21 years."

Donna explained the care that Louis would need both then and when he was older. She took charge of arranging the best treatment plan for him. She then went on to arrange all the nec­essary appointments with the many different specialists. She coordinates our appointments so that we spend one long day at the hospital rather than making many trips.

She often meets us at the hospital on appointment days and escorts us to the various clinics. Over the years, Louis has had 21 surgeries, and Donna has been there for every single one. After each surgery, she has come to Louis' room for a visit and to make sure he has everything he needs. She is never empty-handed. She brings Louis a teddy bear every time. He still has the first one she gave him.

Throughout Louis' life, whenever we have faced challenges getting his health insurance to cover something he needs, Donna has taken the time to write a letter or make a phone call to ex­plain his condition and why the request is medically necessary.

More than a healthcare provider, I feel that Donna is a mem­ber of the family and a friend. No matter how much time passes between visits with her, she always remembers past conversa­tions. She remembers my son, everything he loves to do, and the things that he likes.

"We have been at Children's Hospital and with Donna for more than 20 years. When the day comes that Louis is too old to be seen there, we will be heartbroken."

I could never have expected a healthcare provider to give the care and attention that Donna has given our family. She is more than a genetic counselor. She is my son's advocate and champion.