Throughout 2022, we are celebrating our 40th anniversary. As a part of that celebration, we are pleased to highlight the Shimchick / Millitello family. Denyse was four years old when her family was one of the original 12 who founded the NFED. She and her sister, Virginia Higgins, grew up with the Foundation and were always active volunteers. Today, Denyse is married to Dan Millitello, and their three children continue to graciously say “yes” whenever we ask them for help. Enjoy reading how their family has made service a part of their daily lives.
By Denyse Shimchick
Being affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome has been interesting to say the least. I’m 45 years old and have had 117 surgeries. I have more to come. My three children are 15, 22 and 23 years old and are also affected by AEC. They’ve had more than 100 surgeries among them and are also not done yet.
The four of us are also bald, and we absolutely embrace it. Additionally, we all also have hearing impairment and wear hearing aids. Three of us have no natural teeth as well.
Though we are presented with challenges on a daily basis, I like to think our accomplishments outweigh them, any day! My husband and I are licensed foster care parents. We volunteer for our church food pantry. We’re also affiliated with other organizations that provide services for homeless, veterans, disabled, drug and alcohol recovery, and do prison ministry.
Our son, Dyllan, is 23. Aside from having AEC syndrome, he has epilepsy and is on the autism spectrum. Dyllan is an Honorary Police Sergeant for our local police department. He participates in community events such as “Coffee and Conversation” at our local library with the police chief, the Patches and Badges Christmas Shopping Events with police officers and needy families, and escorts funerals from Marks Mortuary to the cemetery, among other community causes and activities. Dyllan has also volunteered for the National Foundation for Ectodermal Dysplasias (NFED) and the Epilepsy Foundation.
Our 22-year-old daughter, Danielle, has been a published artist since she was 15 years old. Additionally, she graduated college at Southern Illinois University at Edwardsville (SIUE) with honors and two degrees. Danielle is currently training a service dog for Dyllan. Danielle volunteers at our church food pantry and has also been known to volunteer for the NFED and the Epilepsy Foundation.
Our youngest daughter, Delores, is 15 years old. Delores has been a cheerleader, played the drums, and been in chorus and on the Student Council for East Alton – Wood River Community High School. Delores also volunteers in our community by walking dogs for elderly neighbors, cleaning for them, setting their trash out, and taking meals to them when they aren’t feeling well. She also volunteers in our church food pantry and has volunteered for the NFED and various other organizations and causes.
Ectodermal dysplasia doesn’t define us. It perhaps pushes us to be the best possible versions of ourselves, for the greater good and purpose. We live, laugh and love just like everyone else does and contribute to society in a productive, respectful manner.– Denyse Shimchick