MADISON, Wis (WMTV) - One family from Slinger, WI is making it their mission to advocate on behalf of rare diseases at both the state and national level.
The Abbott family made their way to the State Capitol on Tuesday afternoon for Rare Disease Day. Becky Abbott said her 14-year-old son Aidan has a rare disease called ectodermal dysplasias, and for the past several years they have worked to bring awareness.
“As we raise our voices together, our voices become stronger,” Becky Abbott said.
Ectodermal dysplasias are a diverse group of genetic disorders that involve defects of the teeth and more, according to the National Foundation for Ectodermal Dysplasias.
“He is missing many of his teeth, and we have struggled for many years to get insurance coverage,” Abbott said.
Abbott said, after fighting with insurance companies for about a decade, they took their issue to Washington D.C.
“We have gone to the Capitol the last couple of years as well as gone to Washington D.C. to not only share Aidan’s story, but other families who are going through the same struggles we are,” she said.
Their persistence caught the attention of Democratic U.S. Sen. Tammy Baldwin.
“We wrote a letter to Sen. Baldwin’s office and then we also went to Capitol Hill, and Aiden shared his story on Capitol Hill,” Abbott said.
Abbott said after several meetings, Baldwin introduced federal legislation called the Ensuring Smiles Act.
The bi-partisan act would guarantee anyone born with a birth defect get the medically necessary treatments they need, including oral and dental procedures.
“The insurance industry has found several loopholes to deny coverage for the repair of congenital anomalies, whether it be for saying these treatments are cosmetic or not needed,” Abbott said.
Aidan said just because it is rare does not mean it is not a significant issue.
“I hope to accomplish that the legislators will finally listen to me and will finally listen to other people advocating for congenital anomalies,” he said.
Abbott said simply sharing your story can make a big impact.
“Patient stories are very powerful and impactful and legislators need to know your story,” she said.