Lexington family’s heartfelt email about daughter to congressman results in personal visit

LEXINGTON, Ky. (WTVQ) – Henry Clay High School special education teacher Kathryn Schlernitzauer did something she had never done before, wrote a letter to her congressman.

She reached out asking Republican Representative Andy Barr, of Lexington, to support H.R. 1379, the Ensuring Lasting Smiles Act.

But this story is about so much more than reaching out to a lawmaker about a piece of proposed legislation.

Kathryn and her husband, Daniel Schlernitzauer, a sergeant with the Jessamine County Sheriff’s Office, were expecting their second child in May of 2018.  They had a son, Blaine, two years earlier.  From routine ultrasound exams, they knew their second child was a girl and they knew she would be born with a cleft lip and palate.  They had no idea their lives would change forever in a way they couldn’t imagine, until the actual birth.

On May 21, 2018, Kathryn gave birth to 4-pound, 7-ounce Tanner Nicole Schlernitzauer.

“I remember the tension in the room.  Nobody wanted to touch my newborn daughter.  She looked like a burn victim,” Kathryn said.

Tanner was airlifted to Kentucky Children’s Hospital.  Within 24-hours, she was taken by ambulance to Cincinnati Children’s Hospital, where the family learned her diagnosis.

Tanner was born with Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate (AEC).  It is a rare form of Ectodermal Dysplasia that effects the development of skin, hair, nails and teeth.  Tanner’s skin is extremely fragile.  She has diminished ability to perspire.  She has constant, painful open sores.  She will live her life without hair and no enamel to protect her teeth.

Those chronic dental issues impact her ability to chew, digest food and impacts her speech development.  Reconstructive oral and dental procedures can be financially crippling because health insurance companies routinely deny, or delay claims, classifying the extensive work as elective or cosmetic.

The Ensuring Lasting Smiles Act would require private health insurance plans to cover diagnosis and treatment services for congenital anomalies and birth defects, such as reconstructive services and prosthetics.  Coverage would have to include services that functionally improve, repair, or restore any body part that is medically necessary for normal bodily functions or appearance, as determined by the treating physician.

The proposed legislation was introduced in the last two sessions of Congress, but never received a vote on the floor of the House.  Last year the bill was pushed to the back burner once the pandemic hit.  It has been reintroduced this session.  It has bi-partisan support and is backed by a broad coalition of dental and medical groups.

Kathryn’s email to Congressman Barr was so powerful, his staff took immediate notice and brought it to his attention.  He was so moved, he visited the Schlernitzauer home in-person on Monday to pledge his support to the family and for the proposed legislation.

“I was just so inspired by the love and the courage and the strength and then the positive spirit of these parents fighting for their daughter,” Barr said.

The congressman’s support means the world to the family.

“It was such a weight off our shoulders.  I felt like it was us versus the world and now it’s like, this team has gotten bigger,” said Daniel Schlernitzauer.

Congressman Barr’s view of his job and life is through a different prism these days.  Nearly a year ago, he lost his beloved wife to sudden cardiac arrest at the age of 39, leaving behind her husband and two young girls.

“My personal experience losing Carol to heart disease, it can’t help but make you a more empathetic person, not just a lawmaker, just as a human being,” said Barr.

In February of this year, Congressman Barr introduced the Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act.  The proposed legislation addresses the gap in understanding about what makes valvular heart disease life-threatening by authorizing a grant program administered by the National Heart, Lung, and Blood Institute (NHLBI), supporting research on valvular heart disease.  The act has earned the support of major health advocacy groups.  Republican Minority Leader Mitch McConnell introduced the CAROL Act in the U.S. Senate.

Congressman Barr says among the many things that struck him about Kathryn Schlernitzauer’s email message, that she referred to her family’s situation not as a burden, but a blessing.

“This is such a blessing.  I found my real purpose in life and that is the honor to be Tanner’s mom,” said Kathryn.

To learn more about from the National Foundation of Ectodermal Dysplasias (NFED), click here.

Kathryn Schlernitzauer’s email to Congressman Barr is below:

Dear Congressman Barr:

My name is Kathryn Schlernitzauer, and as a lifelong resident of Lexington Kentucky, I am a proud constituent of the sixth congressional district represented by the Honorable Andy Barr. On Wednesday, February 24, 2021, my husband, Daniel Schlernitzauer, had the honor of speaking to Mr. Lance Terrell about an issue of the utmost importance to my family, more specifically–our daughter. After speaking with Mr. Terrell, he directed me to email you as a means of furthering the mission of advocating for our daughter and supporting the Ensuring Lasting Smiles Act (H.R. 1379).

How does one mourn the loss of the child they thought they would have? You don’t. You strongly stand tall, holding your child’s hand through any and all adversities they have been blessed with.

With knowing little as much that our child was to be born with a cleft lip and palate, I gave birth on May 21, 2018 to a 4-pound 7-ounce baby girl, Tanner Nicole. We researched, we prepared, and we did everything to make her entry into this world amazing. Little did we know that from the moment of her birth our whole lives would be changed. The tension in the delivery room stills stings in memory; Tanner Nicole looked like a bright red, scolded, burn victim. Within an hour of her birth, she was flown to University of Kentucky Children’s Hospital, and then within 24 hours was taken by ambulance to Cincinnati Children’s Hospital, where we would later learn her diagnosis.

On Wednesday, May 23, the different teams rounded at Cincinnati Children’s Hospital. Human Genetics took one look at her and gave the clinical diagnosis of AEC: Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate (AEC). AEC is a rare form of Ectodermal Dysplasia that effects the development of the skin, hair, nails, and most notably teeth. Tanner’s skin is extremely fragile, she has the diminished capability to sweat; and she constantly has open sores. She has underdeveloped nails, will live her life without hair, and she has no enamel to protect her teeth.

What does life without enamel mean? Brittle, misshapen, decaying teeth absolutely essential for chewing and digestion, as well as speech development. Tanner Nicole had all thirteen teeth removed in November 2020 due to complete decay as a two-and-a-half-year-old. Individuals who suffer from Ectodermal Dysplasias and other craniofacial anomalies can expect to incur significant out of pocket costs on reconstructive oral and dental procedures related to their disorder during their lifetime.

Through our research and the National Foundation of Ectodermal Dysplasias (NFED), we have learned that families can pay as much as $500,000 out of pocket on expenses on their children’s dental necessities. Health plans systematically and routinely deny, or delay claims and appeals for any oral or dental related procedures- like reconstructive surgery for a cleft palate, under the pretense that such service is merely cosmetic or covered under separate dental plans. This is a common practice across the country and leaves families with the burden of how to pay for their child’s treatment or procedures that are necessary to restore their ability to function.

As a Sergeant on the Jessamine County Sheriff’s Department and a Special Education Teacher at Henry Clay high school, giving Tanner Nicole the life she deserves could financially become very difficult, with the immanent surgeries ahead. I am writing in hopes that you will support the ELSA (H.R. 1379). This bill requires private health insurance plans to cover diagnosis and treatment services for congenital anomalies and birth defects, such as reconstructive services and prosthetics. Coverage must include services that functionally improve, repair, or restore any body part that is medically necessary for normal bodily functions or appearance, as determined by the treating physician.

If you have any questions, please do not hesitate to reach back out. We are happy to share any and all information about our angel.

Thank you for your time and consideration,

Kathryn Schlernitzauer

 

 

 

 

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