By Lisa MacDonald
Because of Norma.
Norma is my sister-in-law. I’ve known her for over 32 years and she is a brave, wickedly funny, fiercely strong and kind person who has been through a lot on her life. She lives in beautiful, rural Nova Scotia. We live in Toronto. Here is a short video about her life with ectrodacyly-ectodermal dysplasia-clefting (EEC) syndrome.
My husband, LeRoy, has attended five National Foundation for Ectodermal Dysplasias (NFED) Family Conferences with his sister Norma, their brother, Joe, from Winnipeg and his wife, Elizabeth. I have attended four of them. Over the years, Norma has learned so much about her own health and has become an expert on her medical needs by attending the conferences. Our whole family has learned alongside her, supported her through the emotional challenges and shared the bonds of friendships formed there.
Norma was 50 years old before she met Jack Kriz and Terri Andrews, who are similarly affected by her exact kind of ectodermal dysplasia, EEC. She could never have imagined that there were other people who looked just like her. Can you imagine how lonely and scary her life must have been up until then? We never want another child or family of that child to feel so alone. That is why we try to help as much as we can at the conferences.
LeRoy and I have volunteered at the registration desk in Columbus, Ohio, greeting new families and helping everyone get their bearings. This year, we had the pleasure of meeting eight amazing kids when we chaperoned their field trip to several Smithsonian museums in Washington, D.C. while their parents took in the workshops. It was a real pleasure getting to know them and since our own kids are all grown up, we learned a lot about this next generation of pre-teens.
Norma’s eyesight has been severely affected over the years because of photosensitivity and corneal damage because her eyelashes grow inward. Although Norma would love to be more involved, she isn’t as able as we are to volunteer at the conference. She does contribute by gathering and donating prizes for the silent auctions and takes great care to curate interesting and desirable items.
I guess the best thing about volunteering for the NFED is the inclusivity that we feel as part of Norma’s “team.” Every one of these kids has a “team” supporting them. Even though Norma isn’t a kid anymore, it is through her that we have met so many wonderful kids and families. It’s because of her that they welcomed us into their NFED family. Our favorite part of going to conferences is connecting to so many wonderful people.
Please consider giving your time helping at the NFED Family Conference in 2018. You’ll love it!
– Lisa MacDonald is a guest blogger and volunteer for the NFED. We are always looking for new volunteers. See how you can help.