Black Sabbath Guitarist Inspires Goldenhar Syndrome Patient and Advocate Not to Let Disabilities Stand in Path of Happiness
June 3, 2017
Peter Dankelson is a previous honoree of our Global Genes RARE Patient Advocacy Awards and he’s continuing to reach out on behalf of rare disease patients. Dankelson was born premature weighing less than three pounds. He had over ten birth defects resulting in a diagnosis of Goldenhar Syndrome also known as Oculo-Auriculo-Vertebral Syndrome (OAVS). Peter required a tracheostomy and feeding tube and was in NICU for almost four months. He has had over 25 surgeries. He is a high-school sophomore and enjoys playing guitar, gaming on Xbox, participating on the fencing team, and pranking students with his fake ear.
Peter related to the best-seller Wonder by R.J. Palacio about a boy with a facial difference. After students read the book, Peter answered questions about what it’s like to have a facial difference and why they should #ChooseKIND. Since 2012, Peter has connected with nearly 10,000 students around the country.
Peter was an Ambassador for Children’s Hospital of Michigan from 2010-2015 and has advocated in Washington D.C. with Children’s Hospital Association.
He has been a hero for so many children with rare diseases, but Peter has some heroes of his own.
In a new video, Peter shares why Paul Stanely from Kiss & Tonny Iommi from Black Sabbath so inspire him. They overcame disabilities and still became successful musicians. Paul Stanely has microtia/atresia of his ear, similar to Peter. He hopes to one day be able to meet these musicians. Check out his thoughts in the video below:
His friends, family and followers hope that music will keep up his spirits as he heads into his most significant surgery in a few short weeks. Peter will be having major jaw reconstruction on June 13th, including placement of a custom TMJ implant on his left side. The surgery is expected to be over eight hours long with a lengthy recovery. He will have his jaw wired shut for two weeks.
He is excited for the changes to his jaw that will give him a secure airway and the ability to chew food.
Peter has four more assemblies booked in Michigan next week before wrapping up the school year. In total, he has now connected with 8,000 students at 41 different schools in 12 states!
You can login here to your account or you can register to start saving, exploring and sharing resources and news. Connect with our community now!
Register to get the latest updates
Please join the RARE Portal to add diseases of interest to your personal profile. By creating a profile, you can receive news, resources and updates related to this disease as well as many other benefits.
Register to share with the community
You must be Corporate Alliance or Foundation Alliance member to contribute resources. Please contact us if you have a resource you’d like us to consider.
Contribute with resources
Alliance or Foundation Alliance member to contribute resources. Please contact us if you have a resource you’d like us to consider.
Be a Guest BLOGGER
Thank you for your interest in becoming in a guest blogger. Please email email@example.com for more information.