Age 8, Kansas

Meet Franklin. Every Sunday, Franklin sits in the front row at church so he can shake everyone's hand. He loves music, books, and is a wiz on the iPad. He's non-verbal but has the most beautiful laugh.

Frankie has Neurofibromitosis Type 1 (NF1). He is trach and g-tube dependent, is non-verbal, deaf and blind on his right side, and has weakness from a stroke on his left. He wears a bone conduction device to hear and uses sign language and a communication device.

Frankie receives therapy at school thanks to his IEP (Individualized Education Plan), and is now walking independently thanks to his own determination and the dedication of his physical therapists.    

Frankie is fortunate to live in a community that has done a great job at implementing accessible accomodations for people with disabilities – his school playground was recently upgraded to include wheelchair users (awesome). However, Frankie's mom says one of their biggest challenges continues to be bathrooms which don't accommodate changing areas for larger kids and adults. No one should be forced to lie on a dirty bathroom floor!      

Frankie's family was told that he wouldn't make it to see his 1st birthday, but this year he will be turning 9! Frankie's mom, Jane, says that access to health care has been critical to his well-being:

"I'm not sure what we would do without the protections of the ACA. Frankie would have long ago crossed the lifetime cap. We rely on the HSBS waiver for so many things, nursing, extra PT/OT, the list goes on and on. I'm certain Frankie would not be alive today if it were not for the access to health care we have had to take care of him."   

Submitted by Franklin's mom, Jane