Fighting for Future Generations of My Family

My name is Laura Steyer. I am the National Foundation for Ectodermal Dysplasias (NFED) advocacy state lead for Indiana. I live in Highland, Indiana, along with my husband, Rick, my 16- year-old son, Nathan; my 4-year-old daughter, Penelope; and my 3-year-old son, Dylan. I work as a Registered Nurse in a local Emergency Department.

My youngest son, Dylan, has hypohidrotic ectodermal dysplasia (HED.) I am a carrier. I diagnosed him myself when he was about 13 months old. I knew something was wrong when he only had two conical shaped front teeth.

A quick google search of “conical shaped teeth” revealed pictures of several boys that looked quite similar to my son. Even though I had never even heard of HED, I knew that’s what he had. The pediatric dentist agreed with me and then genetics confirmed.

Knowing I passed a rare genetic disorder to my son made me feel pretty helpless.

Deciding to become an advocate for health care coverage for the extensive dental care my son will need helped me to gain some control back.

Dylan Wants Teeth

My son is amazing and deserves this. Dylan is so sweet, loves to cuddle, loves to wrestle, run and do flips, and absolutely loves cars. He now has five teeth, and it appears that will be all he will get. He tells me often he needs more teeth so he can “chomp, chomp, chomp.”

He cries, asking me for more teeth. He once asked me if he could have mine, which obviously broke my heart. He gets upset when his sister can eat things he can’t. He also still struggles with making certain sounds and is in speech therapy. He is in preschool now and loves it.

Why I’m an Advocate

I am an advocate for the Ensuring Lasting Smiles Act (ELSA) because I want to be able to save for college for him and not have to take out a second mortgage to pay for care that his medical insurance should be paying for. Teeth are not cosmetic. He needs his teeth for chewing, swallowing, speaking, and to build good self esteem.

I want to be a role model for my children. I want them to know that if you believe in something, you should fight for it. Don’t take no for an answer, and never give up. I want them to know I will always fight for them and always be in their corner.

I am fighting for future generations of my family, for the distant relatives I have found that are affected, and for all the amazing new friends and families that I have been blessed to meet in the ectodermal dysplasias community.

So far, I have gotten Congressman Peter Visclosky to cosponsor our bill, and I continue to make emails and phone calls daily to Indiana senators and representatives to join us. I have met with several and am hopeful they will be supporting us in the near future.

I think everyone should be out there advocating for their family, because knowing you are making a difference for not just your own family, but for the thousands of us that need the Ensuring Lasting Smiles Act passed, feels pretty amazing! We all need to stick together and stand up for what we deserve! We need every state involved and every family involved!

– Laura Steyer is a guest blogger for the National Foundation for Ectodermal Dysplasias. 

Editor’s Note – If you would like to volunteer for the NFED, take your first step here. We are still looking for volunteers to be Advocacy State Leads. Check here to see if your state is listed. If you are ready to take action, you can advocate for ELSA now using our easy advocacy tool.