By Mary K. Richter
As I age, the process is taking its toll. My mobility isn’t so good and my memory sometimes escapes me. But there are those memories I will never forget particularly the early families who displayed confidence in what I was trying to do.
The Shimchicks, the Schuermans, the Tanners and a little girl named JoAnna Daniel. (You may know her as JoAnna Nix.) It was JoAnna that taught me the importance of what we were trying to accomplish…an understanding of what the ectodermal dysplasias were and what needed to be done.
Our very first fundraiser was a walk that started in the community park in Mascoutah, the original home of the National Foundation for Ectodermal Dysplasias (NFED). That day, as we were about to begin, a little girl walked up to me with her hands in her pockets. I’m going to guess she was about 6 years old.
I walked up to her and offered my hand which she reluctantly took. She was affected by ectrodactly-ectodermal dysplasias-clefting syndrome, more commonly known as EEC. I told her she had a sweet little hand which made her smile.
One Tough Cookie
JoAnna lived a life giving lots of smiles to those she knew. She was a tenacious fighter when it came to things she loved doing even when the going was tough. In high school, she was a member of the cheerleading team and I’ll simply say she wasn’t treated well.
But she always persevered and taught others about courage, determination and love. She was one tough cookie and taught others by her example.
Today, I learned that JoAnna passed away and the hearts of all who knew her ache. She had fought a valiant fight with throat cancer, which took several ear, nose and throat doctors to discover. She fought hard and had won the battle, with one remaining problem, her throat tissues did not want to heal properly.
This led to all sorts of issues including narrowing of her airway and difficulties with swallowing. She never gave up just as she did throughout her life. Still, the issues were more than her body could handle.
I’ll always remember that little girl and the joy that she brought to so many. She was a mentor to others with the same condition and always talked with confidence and joy. Those of us who knew her learned a lot about life and living and she gave it her very best.
Read JoAnna’s Obituary
Never will there be another angel like JoAnna. I trust she’ll take my hand when we meet again.
Mary K. Richter is the founder of the National Foundation for Ectodermal Dysplasias and served as executive director from 1981-2010.