By Amy Leverenz

My name is Amy Leverenz and my daughter, Molly, has autosomal recessive hypohidrotic ectodermal dysplasias (ARHED). I have been a pediatric intensive care unit (PICU) nurse for 19 years and informing doctors and insurance companies about Molly’s condition has kind of become my passion when all I was really looking for was someone to talk to about HED.

Although I see many different genetic disorders in pediatrics, I had never heard of ectodermal dysplasia and began trying to educate myself about this rare condition. Throughout all of my research, the National Foundation for Ectodermal Dysplasias (NFED) name and website kept appearing and it seemed that this was the best place to learn about her condition.

An Emotional Conference

We have had a positive diagnosis since she was 18 months old and she is now seven. We went to our very first NFED Family Conference when Molly was three years old after we had a very bad winter with multiple hospitalizations. I went to conference basically to get answers and to see if other people with a similar diagnosis had the same issues that Molly was experiencing.

Here’s Molly and I at our first Family Conference in Ohio in 2014.

My first experience at conference that I will never forget was how emotional I was and how everyone treated me like they had known us for years. I had a “buddy” that first year named Shay who really showed me around and introduced me to many people from all over the country.

The next couple of years were pretty easy for our family in regard to Molly’s health. I decided that I really wanted to help give some of my positive words of encouragement to new families at the Family Conference. I have been told that by our third conference, I had really “come out of my shell” and didn’t know a stranger.

Finding My Inner Advocate

I am the lady in orange advocating on Rare Disease Day in Illinois.

Kelley Atchison from the NFED staff approached me to help her out on Rare Disease Day 2016 at the Illinois State building and represent the NFED since I lived so close to the capital city. This is where I really found my purpose in not only helping my own family but so many families in Illinois that have medical issues with no help. I began introducing myself to legislators and politicians and realized that nothing happens at a very fast speed when you are dealing with the government.

Molly and I advocated in Washington D.C. this past July on the NFED’s first Ectodermal Dysplasias Advocacy Day on Capitol Hill.

For this past Family Conference, we were in Washington D.C. We were able to go to Capitol Hill and start the process in getting a law to make sure that people with congenital issues with their teeth can have medical insurance pay for necessary treatment such as dentures and implants.

Molly and I and a few other NFED families from Illinois met with Senator Dick Durbin of Illinois on the Ectodermal Dysplasias Advocacy Day. We shared our story and told him about the need for a law mandating health benefits for dental care of ectodermal dysplasias.

I probably told Molly’s story 20 times that day and the problems we have had with medical and dental insurance paying to restore and crown her baby teeth so that we can keep them in as long as possible since she only has two adult “shark teeth” (this is what Molly calls her teeth). I truly felt that we were really making an impact on so many lives that day and that felt truly amazing.

Making a Difference

I have read all the literature on Molly’s condition and I have attended all the seminars several times but what I truly love about volunteering for the NFED family is making an impact in many different ways. By either being a friendly face at conference for those new families or trying to better our children’s future healthcare coverage.

I am continuing my volunteer efforts in the coming years. I was just appointed to the Rare Disease Commission in Illinois. We hope to impact all families in the state with rare diseases by helping with insurance and nursing coverage.

I am hoping to have a small fundraiser at my hospital I work for this winter to help raise awareness and much needed funds for ectodermal dysplasia.  However, I had planned to do this event last winter but Molly had her worst illness yet. It landed us in the hospital for more than three weeks so I am not planning it quite yet since life sometimes gets in the way.

Molly and I shared taught physicians and medical students about her type of ectodermal dysplasia at a Grand Rounds that the NFED sponsored in Virginia this past July.

I volunteer for NFED to raise awareness among doctors and dentists and all medical professionals so that more and more people know about ectodermal dysplasia. This will help people get a quicker diagnosis that will help them receive the care and answers they need.

I know that even though everything I have done is quite small, it makes my heart happy to be able to give back to this great organization that has changed our lives for the better.

(Amy Leverenz is a guest blogger and volunteer for the NFED. Learn more about how you can volunteer for the Foundation.)

3 comments on “My Life as Nurse, Mom and Advocate”

  1. 1
    Nicole Blake Beecher on January 11, 2018

    Very proud of you Amy and impressed with your passion to educate and advocate for rare diseases. You are an excellent nurse, which makes you even more valuable to your daughter and NFED. They are blessed to have you.
    Keep up to great work! I learned just from reading this article. Thank you!
    Hugs 🤗

  2. 2
    Sandra Ettema on January 12, 2018

    Amy is an AMAZING nurse and compassionate and caring colleague and friend… I had no idea the amount of giving she does and this article shows her dedication to her career, her patients, her colleagues, her friends/acquaintances and her family…

  3. 3
    Sherry Loftis on January 27, 2018

    Thank you for sharing Amy, I have been a nurse for 40+ years never hear of this until recently when my great-grandson was given this diagnosis by none other than a dentist. I have know something was amisss since birth. Hoping to be an advocate for my great grandson. He will be 2 in May2018

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