In this month’s Volunteer Spotlight, we feature Sandi Hirst, a member of the National Foundation for Ectodermal Dysplasias (NFED) and a passionate advocate for the Ensuring Lasting Smiles Act (ELSA).
For the last two years, she’s been effective in sharing with her legislators how ELSA would relieve the financial burden that comes with having multiple family members needing life-changing oral health care. She has bravely explained each family member’s struggles with missing teeth with legislative offices at NFED’s Virtual Advocacy Days on Capitol Hill. You can join ELSA advocates, like Sandi, at our next Advocacy Day on October 19, 2022.
Sandi has made an impact in her state. Her advocacy is crucial to obtaining the support of Senator Patty Murray who is the Chair of the U.S. Senate H.E.L.P Committee, the committee that will review ELSA and help it move forward. Advocates who are persistent, like Sandi, are the reason we have been successful in garnering support and moving ELSA forward through Congress.
Read Sandi’s story to learn more about the people she loves and how they inspire her to advocate for ELSA.
By Sandi Hirst
My husband, Allen, was born with x-linked hypohidrotic ectodermal dysplasia (XLHED). As a result, he has faced multiple challenges throughout his life, but one of the most challenging was dealing with no teeth.
His parents lived in Electric City, Washington, a small town with limited medical resources. His mom had to take him to the University of Washington School of Dentistry by train for every appointment. He had mis-shapened teeth that grew in strange places all over his mouth. They were all pulled, and he got his first set of dentures at about age four.
As he grew, he needed new dentures, which meant more trips across state. My story starts with my husband, Allen, but is more about our three daughters and our three grandchildren (out of 11!) who are also affected by XLHED.
Six-Figure Dental Costs
We have lived our entire married life in Spokane, Washington. My daughters each received their dental care here in Spokane. They all had missing and malformed teeth that required crowns, braces and finally, implants for the functionality they needed for good health. I am an RN with good health insurance, but dental insurance only covered a small portion of our dental expenses. We paid more than $100,000 out of pocket over 18 years for their dental care.
One of my favorite stories is about my youngest daughter, Emily. Emily was a beautiful girl who would only smile with her mouth closed. Because she was the youngest, we could not afford to do her care until her older sister’s care was paid for. Emily got her braces with fake teeth wired into them while in junior high school. All of a sudden, she had a beautiful smile, and she smiled a lot!
We have three grandchildren affected by XLHED, two granddaughters and a grandson. One granddaughter, Siri, lives in Cave Creek, Arizona and the other two live in Spokane, Washington. Siri is starting to look at long-term dental plans which may include, braces, caps, and implants.
My three-year-old granddaughter, Eliana, lives in Spokane and is missing half of her teeth. The ones she has are malformed. She will need several sets of braces, implants, and crowns throughout her life. Her parent’s insurance will only cover a very small portion, if any, of this dental care.
We knew that my grandson, Finley (pictured at the top), would be affected with XLHED before he was born. His mother traveled to Germany during COVID for an experimental treatment that the NFED has supported. The benefit of this treatment allows him to sweat but does not affect his teeth. He has no teeth.Read Finley’s Story
Every time it gets hot, I like to touch the top of Finley’s head. It is always wet with sweat! He loves to go outside and play in the dirt, like any other boy. The heat does not seem to bother him!
I have another grandson, Nolan, who is the same age as Finley but is not affected. I can give Nolan celery, carrots, broccoli, and crackers without problems. Not so with Finley. He needs to have all his food soft, vegetables cooked, and meats almost pureed in order to keep him from choking.
His parents, who also live in Spokane, are looking at expenditures for dentures when he reaches three to four years of age. He will then need replacement dentures every two to three years as he grows. He will need bone grafts to help the lower jaw stay in shape and grow healthy bone. When he is old enough, he will need multiple dental implants.
Advocating for My Family and All Families
Finley, whose name means fair-headed warrior, is a joy. He is a smart, happy boy who wants to explore his world like any other little boy. He will have challenges throughout his life because of his ectodermal dysplasia. He will have to successfully deal with his challenges. With proper health care, he should be able to eat a healthy diet and speak like others.
I was born with a heart valve defect. Way back in 1965, my parents’ health insurance paid for my heart valve replacement as a part of their normal plan coverage. Why can insurance deny coverage to my grandchildren for their medically needed oral care?
Please volunteer for advocacy. Let your voice be heard about ELSA. This is super important, not only for your family, but for all families affected by ectodermal dysplasias.