Feb. 21, 2017 – West Bend, WI – West Bend’s Aidan Abbott is headed to the capitol in Madison to discuss his rare disease and changes needed to state dental laws. See his story below.
My name is Aidan Abbott and I am 12 years old and a rare disease advocate.
I have a rare disease called XLHED, a form of Ectodermal Dysplasia. In the past year I have traveled to Washington DC and shared my story on Capitol Hill.
Next Monday I will be attending Rare Disease Day in Madison, WI at the capitol. I will be sharing my story with legislators and other rare disease families.
For the past few years I’ve been trying to get state laws changed to include dental coverage under medical insurance for kids who suffer from major dental issues and many missing teeth.
Children with my disease often are missing most or only have a couple of teeth. It makes it difficult for us to chew talk, eat, swallow and are made fun of and bullied.
I would love to share my story so I can change the laws and fight for all the kids who suffer from dental issues and no treatments.
Side note: Read more about Aidan and his visit in 2016 to Washington D.C. when he met Congressman Paul Ryan by clicking HERE