By Jennifer Burrell
Jennifer Burell is the mother of 7 year old twins, both of whom are affected by Ectodermal Dysplasia/Hay-wells Syndrome. Jennifer lives in Southern California and is currently a stay at home mom.
I am the mother of boy/girl twins who both were diagnosed shortly after birth with a rare and lifelong medical condition. It’s a form of ectodermal dysplasia called Hay-Wells syndrome. Hay-Wells syndrome is a genetic condition that affects the fetal development of many different parts of the ectoderm such as skin, hair, teeth, fingernails, sweat glands, and tear glands.
Having children with a rare condition such as this has been the single most enlightening, life changing, and educational experience I have ever had. And I mean that in a very positive way. The first and most important thing parents of children with genetic conditions need to understand is that this is not your fault. There is nothing you did or didn’t do that caused or would have prevented this.
The next thing that is important to understand is that, with support, education, and collaborative medical care, this is a very manageable condition. My children are the absolute joy of my life. They are happy, active, and beautiful children. There is nothing about Hay-Wells syndrome that affects their cognitive abilities. They are in regular public school and thriving there. They have lots of friends. They ice skate, play piano, and do most all of the things that their friends do.
One of the things I did when they started school was to give the teacher a handout about Hay-Wells syndrome and about how my kids are affected. It talked about “how they are the same” and in what ways they are a “little different” and need to be careful. I gave the teacher a stack of these handouts and asked her to please give them out to the class to take home to their parents. I received very positive feedback from this. Parents were educated and able to talk to their kids and answer questions about the “condition” in a positive and upbeat manner. We have not had a single issue of teasing or bullying and I believe that the handout played a big role in that. In general, I have come to realize that humans are uncomfortable with what they do not understand, and often times deal with their discomfort in inappropriate ways. Educating people is the key.
The National Foundation for Ectodermal Dysplasias helped me to understand that a medical condition such as this is not a life sentence. It’s an enlightening experience. I know my children will grow up to be happy, fully independent, and productive members of society, and isn’t that what we all want most for our children? I look around me in my daily life and realize that there are a lot of human beings in this world who are much worse off than my kids, and they don’t even have a medical condition. We all have limitations in life; some are just a bit more obvious than others.
This whole experience has taught me so much about acceptance, being truly grateful for what we have, being non-judgmental of others, and really knowing what it is really important in life and not sweating the small stuff. I wouldn’t trade them, or all I’ve learned from them, for anything in the world. When my kids were just babies and my husband and I were struggling with their condition and learning about it and how to manage it, I admit that I felt a bit sorry for myself and depressed about all we were going through. My mom gave me a beautiful saying that I have kept with me ever since. “I was sad because I had no shoes, until I met a man who had no feet.” If this is the worst thing we have to deal with, then we are truly blessed.
This blog is featured as a part of Ectodermal Dysplasias Awareness Month, which is celebrated in June. For more information, visit the National Foundation for Ectodermal Dysplasias’ Web site at http://www.nfed.org.