Jen’s Gonna Run Again with the ExoSym Bionic Leg

That’s me, a literal tree-huggin’ hippie who just wants to be able to get active outdoors again.


(If you’d like to donate offline, you can Venmo me at @thejenlopez or drop me a message for my mailing address.) 



In short, I used to do stuff, I used to be active and outside, and the effects of 26 years with a “very rare, very benign” peripheral nerve sheath tumor have destroyed my ankle, impaired my walking, and make every day painful. I’ve spent years looking for a solution and I’ve tried so many approaches, so many braces, and so many work-arounds to keep active and mobile.


Every few years I ask doctors about fusing my ankle so it won’t hurt. You’re too young, they’ve said. I ask about replacement: the technology isn’t there, they say, it’s not nearly as good as knee replacements, and it’ll wear out too soon. I’ve fought through fear and asked about voluntary amputation and I’m immediately shut down - it’s a healthy limb, they say, fully ignoring the ghastly X-rays on the screen next to them. 

[said ghastly xray]



I’ve found, finally, a promising AFO, an ankle-foot orthotic, designed by a prosthetics specialist for military folks. Ryan Blanck had been at the Center for the Intrepid in San Antonio, TX, and was seeing more limb salvage patients who were frustrated that they didn’t have the level of mobility they were seeing their buddies who had had an amputation and were fitted with a high-tech prosthetic that had them back to running, jumping, and moving so much better than they were experiencing. The device, called IDEO (Intrepid Dynamic Exoskeletal Orthosis) then and ExoSym now, was limited to military folks until Ryan joined the Hanger Clinic in Gig Harbor, WA and he took on his first congenital patient. No longer was this a device for folks who had been, until a recent traumatic injury, fully active, but it’s now available for people like me who’ve had a really long decline and loss of function. I’ve been watching videos from patients who’ve received this life-changing device, and folks are running - with a near-perfect gait - within days of being fitted with the ExoSym. 

[Nia’s video of running and jumping!]

I’ve been accepted into the program - they’ve seen my X-rays, my gait, my medical records, and my story - and I’m headed for my initial appointment mid-May. This device isn’t covered by insurance. Insurance would cover another barely useful plastic splint, but that’s been done and it isn’t good enough. You can help cover the minimum $9000 price tag for the ExoSym - that includes a week of intensive training to learn to use it - to walk, run, sidle, and move in ways I haven’t been able to move in decades. There’s a chance I’ll need the knee section, too, and that’s more. Plus, there’s travel and lodging and shoes (I hear the carbon fiber wreaks havoc on shoes, and they’ll have to be extra wide to fit my already 2E and 4E feet plus the brace!)

[my shoes]



The first week, I’ll be posting a longer version of my story in the updates, and then from there I’ll keep y’all updated on my progress.


The first visit creates a plastic prototype to make sure it’s going to be a good match for me, and, provided that goes well, they’ll make my carbon fiber device and I come back for a week of fitting and training. I’ve been watching other patients’ videos of their experiences, which have been invaluable in learning what to expect, and I’ll be sharing my experience, too.