Raising Our Voices Together to Make a Difference (by Aiden Abbott, age 13)

Aiden with his Dad and Brother visiting the Capitol.

My name is Aidan Abbott, I’m 13 years old, live in Slinger, WI, love to play basketball and my favorite team is the Milwaukee Bucks. I also have a rare disease called Ectodermal Dysplasias.

People born with Ectodermal Dysplasias have severe oral and dental issues due to missing teeth. They also have sensitive skin, don’t sweat, and other health issues. I was blessed to be born with some of my teeth; however, others who have Ectodermal Dysplasias are born with only two teeth and some are born with no teeth.

Most families, like mine, have to fight for insurance coverage to cover our complex dental issues and insurance will constantly deny treatments. I think this is wrong. Kids need teeth to speak, eat, and chew, and it helps to have teeth so kids don't bully you.

Over the past few years, I have been going to Capitol Hill to advocate for medical insurance coverage for the repair of congenital anomalies, including dental treatments that are medically necessary. Each time I travel to Washington, D.C., I visit all of my legislators, and share my story. During one of my first visits to Capitol Hill, Senator Tammy Baldwin from Wisconsin not only listened to my story, she took action and worked on the Ensuring Lasting Smiles Act (ELSA). This legislation will ensure that medical insurance cover repairs and treatments of congenital anomalies for kids and adults like me. I even had the privilege of naming the Bill the Ensuring Lasting Smiles Act (ELSA).

Aiden and his family and Allison and her family with Senator Tammy Baldwin.

My friend Allison, who also has Ectodermal Dysplasias went to Capitol Hill with me and shared her story with her legislators. Ally was able to garner support from Iowa Senator Joni Ernst, who agreed to co-sponsor ELSA, when it was introduced by Wisconsin Senator Tammy Baldwin. The Ensuring Lasting Smiles Act was introduced in August 2018 and has bipartisan support in The House and The Senate.

It is important for kids and youth to share their stories and advocate on Capitol Hill. Legislators need to hear our stories and understand the struggles we go through and the insurance coverage issues our families face. If our legislators don't know about our insurance issues, they will not be able to help us.

I have made it my mission to work with Senator Baldwin's office and my other legislators to make sure that everyone born with congenital anomalies get the coverage and treatments they need. My family, along with the other National Foundation for Ectodermal Dysplasias families continue to contact their legislators and ask them to support our cause.

If we all raise our voices together, we can help bring change to kids and families who desperately need medically necessary care and treatments. If you’re over 18, make sure you vote for candidates who will protect our care in the upcoming midterm elections. And, no matter what age you are, you can start talking to your legislators at home and in D.C. about the issues your family faces.

I look forward to seeing you all on Capitol Hill in the future!