By Peter Brennan
New South Wales, Australia
When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought things would run pretty much the way they had for us as children growing up. We were prepared for the regular childhood problems. Colds, flu, broken bones etc.
But when we were told that our son, Tom, had a rare genetic condition called ectodermal dysplasia, we were not prepared! Tom was just 14 months old and we were on another visit to emergency room with a temperature we couldn’t bring down. The doctor then told us that Tom would probably not survive past two years.
Our little family began a journey we had not prepared for. We have taken long winding paths when a much shorter path was there. And we have traveled alone when there were many people willing to travel with us.
The very best thing we discovered was a family in Brooklyn, New York. Through the National Foundation for Ectodermal Dysplasias (NFED), we met and have maintained a wonderful relationship with the Ferris-Newton Family. Their son, Mac, is also affected by ectodermal dysplasia and together we have traveled with the boys from toddlers to amazing young men at college.
The NFED was the difference between Tom’s condition being perhaps a lonely path, not knowing anyone else affected, to one where our family celebrates the birthdays and holidays, the good and the hard times with an amazing family across the pond. The families have been friends now for over 16 years. We stay in touch by writing letters and cards, by emails and by social media and an occasional visit.
The journey that your children take you on may not be the one you planned but with the NFED it can be a rich and rewarding one. Volunteer and make a difference in someone’s life affected by ectodermal dysplasias. Make a friend (a.k.a pen pal) and start your own life long “friendship” journey.
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Intresting!I surely would like to make friends with other individuals with HEC.That way,we can encourage one another and give strength to one another with the knowlege that we are not alone.Also,to help us know that we are not abnormal.We can certainly live normal lives like every other person.
Hello. We encourage you to check out our Facebook page where you can connect with others. We also have 14 Facebook groups you might like. Also, if you email us at info@nfed.org, we can connect you with other families. We are here to help! ~ Jodi, NFED, Director, Marketing and Communications