Bionic Legs

Hello! My name is Ali and I was diagnosed with Spastic Ataxic Triplegia, a form of Cerebral Palsy, at age two.

Over the past 10 years I have increasingly dealt with chronic pain, fatigue, and decreasing mobility as a result of the toll CP has taken on my body.

My husband, Sal, and I have two children, ages 14 and 7. There aren’t many activities we can all agree on, but hiking, road trips, & being outdoors were always our go-to family activities. Whether it was the park trail 15 minutes away, packing the ice chest for a day trip to Multnomah, or a 6-hour drive to the Oregon Coast, we loved being outdoors together. I had to stop & rest a lot, but the exercise helped to manage my pain, & it was always an adventure.

Unfortunately, I am no longer able to do those things. I am an inherently active person, but now forced to spend most of my day in bed, unable to even make a meal for my family, & even chauffeuring the kids to school activities and appointments is painful & difficult.

Standing & walking are extremely painful, & sitting is equally as painful - making my wheelchair no longer a viable alternative to walking.

Our family was very involved in our local church & community outreaches & events, but now I avoid going to church. I can’t bear to sit in a chair for an hour-long sermon. I no longer participate in community events, & I almost always have to say no to activities with friends or family. The pain and fatigue have taken over my life. I have managed it as long as possible with medications to release the tightness & ease the pain, stretching, & taking rest breaks throughout the day, but these things are no longer enough.

I’ve Been Considering Leg Amputation 

After hearing about how a man with a congenital birth defect had his arm voluntarily amputated because it was keeping him from his dream of becoming a wrestler, I started to research whether bilateral leg amputation would be a good option for me. I figured it would help the awful pain I have in my femurs while walking, but before making a scary, drastic, permanent decision like that, I wanted to find out if it could also help my hip, back, shoulder, & neck pain. My thought was that a lot of what is causing my pain is the fact that, because of 34 years of muscle tightness & incorrect gait, my knees turn inward and my bones have become deformed. If I were using prosthetic legs, the legs would be functioning in a way that does not require my hips & back to compensate, & there would not be added stress and strain.

The thought of losing my legs was scary & sad, & I could only hope that I wouldn’t regret it afterward. But if it meant that I could hike with my family, sit in church, and lead worship on a stage again, it was a chance I was willing to take. I planned to find out as much as I could and bring it up to my doctor the next week.

I typed “voluntary bilateral leg amputation for CP” into Google. And that’s when I came across the ExoSym.

What is the ExoSym & Where do you get it?

The ExoSym, created by Ryan Blanck, is a carbon fiber custom-fit orthotic, designed - for leg injury, disability, & limb salvage - to kinetically reroute the pressure & energy to the correct places. It was originally designed for injured active military, & has recently been made available to civilians. It has allowed people facing amputation or a life of pain to return to their normal, active lives. People come from all over the country and all over the world to be ExoSym patients - right here to Gig Harbor!

I even watched a video of a patient who before the ExoSym, could barely take a step, & after, was back to her normal life - including a 120-mile race! After spending years not being able to walk!

After watching & reading several of these testimonials (You can find plenty on YouTube!), I emailed Hanger Clinic to find out if it might work for me, & how to begin the process.

They told me that they screen each prospective patient to make sure they are a good candidate for the ExoSym - to make sure the Exosym can greatly improve their mobility & reduce their pain.

They took my application, with included medical history, the details of my limited mobility & disability, & photos & videos of my legs & gait. In about a week I got the email that I was a good candidate!

Sal & I traveled to Gig Harbor, where they asked a few more questions & casted my legs for the custom temporary product I would try out the next day.

When I tried the ExoSym 

The next day I put on the trial product. It was such a different walking experience for me that I had to use walking poles in order to not lose my balance with every step! Ryan patiently made adjustments to the parts of the brace that were rubbing on my skin & helped me make gradual adjustments to my posture & stride as I walked.

But I walked up & down the gym for over an hour with very little pain!

They explained to me that when they make the real model, you come in for a 5-day training period where you learn to walk, run, jump, & climb stairs in them efficiently & effectively, in the way that most benefits your body. Ryan even gave me his personal cell phone number to text or call him any time I had questions before & after I have the product. I’ve already texted him some questions about driving after I have ExoSym! 

I have never worn anything that helped me walk as well as this. Standing was so easy. And being able to be an involved mother & community member again sounds like a dream.

But, as dreams usually do, the ExoSym has a high price tag. Hanger Clinic is not able to bill patient insurance directly; only in the patient’s name after the product has been purchased. That requires payment upfront for the ExoSym, with only a possibility of partial reimbursement from Medicare after the fact.

The ExoSym is a $9000 product. I require bilateral devices (both legs), as well as added knee sections to help keep my knees in the correct position & movement.

The total for my devices will come to over $21,400. In addition, there are the necessary expenses of traveling to Gig Harbor for the 5-day training period. (Training is free).

Thank you so much for caring enough to read my story, & thank you for any financial & prayerful contribution you are able to make!

For those who may inquire, any reimbursement from Medicare would go to the necessary post medical care such as physical therapy, personal training, & doctor visits.

Thank you!

Love,

Ali & the Garcia family